What Do You DO With Your Time?

Since my  husband and I sold our business and "retired" in 2005, the pervading question has become, "What do you DO now?"  Oh... how long do you have?!  I honestly wonder how we ever worked... and maybe you have heard this from other "retirees."  We knew that I would have the responsibilities of caring for my grandmother... but we certainly were not expecting to be caring for a baby!  The old adage of telling God your plans and making Him laugh would certainly apply!

So today, a lifelong friend dropped by to pick up something for her husband, and she asked, "So what do you all DO now?"  I explained that we took care of my grandmother... although that had become less time consuming in some ways now that she is in the ALF... and I told her about Timothy.  I didn't even get around to telling her that my husband, Greg, delivers Meals on Wheels to senior citizens at least one day a week, and he has taken on more and more responsibilities with his mother, who will be 86 in June.  He takes care of her yard, helps her with household repairs, drives her to out-of-town appointments, and much more... and as times goes by, I am sure he will be doing even more for her.

Actually, my friend who dropped by today probably understands better than many.  Her own 80-something mother was in the car.  I invited them inside, but she said they had been out running errands, and her mom was tired and ready to go home.  She also told me that her oldest son and his wife now live in England, where I think they are doing mission work.  When they left the U.S., their little girl was 2... and my friend and her husband saw the child every day, since they lived virtually next-door.  She kept saying, "I know you must be heartbroken without your baby."  I could tell she genuinely understood how lonely it's been around our house since Timothy left.

I think my point in sharing this with you is that most people don't have a clue what it's like for members of the Sandwich Generation.  They may have some idea of what it's like to care for children and your family... particularly if they have - or had - children and a family.  But many don't understand in the least what is involved in caring for an elderly person... even one who is fairly able-bodied and mentally clear.  I'm not sure that you can even truly prepare someone for the physical, mental, and emotional challenges that are involved.  If you try to share this information with others, they often don't believe it - or they think their situation will be different.  More often, they simply don't listen.

My sister-in-law has been experiencing huge challenges with her 95-year-old mother over the last six months.  She has told me about several experiences that were quite familiar to me... but it was as if they were totally new to her.  One day she said a friend of hers had told her that... "a lot of people are going through the exact same things as you," and she said, "You know... I guess she's right!"  HOPEFULLY, some of you who read this blog will realize that you are not alone... that there are a lot of people experiencing the same issues you have with your senior - and your spot in the "sandwich." 

More importantly, I hope we all realize that our situation may test our patience (if not our endurance and our sanity at times), there is very possibly someone who faces bigger challenges and could use a hug and a simple, "I understand what you are going through."  My friend did this for me today... and I am truly grateful.  Is there someone you could bless and encourage out of your experience base?

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My grandmother continues to have good days and bad.  When I visited yesterday, she was at the nurse's desk getting a Tylenol - for a headache - or so she told the nurse.  We went to her room, and she sat down on her bed.  The pill was in its little cup on her walker seat.  I asked, "Would you like some water?"  She looked at me like I was crazy.  "... to take your Tylenol?" I continued.  "Yes!" she answered.  I asked about her headache.  "I don't have a headache."  "But you told Lola your head was hurting."  "I know it, but I sat out there, and I just hurt."  I asked where she hurt, and she replied, "All over!"  I found out later that "out there" meant she went to the dining hall and listened to special music.  I'm not clear on how that made her "hurt all over," but the whole time I visited, she laid on her bed.  Usually, she is up and down and won't lie still - even if she is not feeling well - but yesterday, she didn't budge until I asked if she was ready to go to lunch.

Timmy modeling new
clothes I made for him.

I'm still trying to take a piece of sewing to show her every time I visit... or a quilt or something to do with sewing.  I took two quilts I had bought recently at an auction, and she studied each one and gave me several "I tell you whats!"  She said, "I tell you what... quilts just do something to me."  She was such a wonderful seamstress and quilter... piecing and quilting everything by hand.  Sewing and things related to sewing are about all we have left to connect on... and the smile on her face is all the communication we need.

Timothy and Zola in their
matching outfits I made for them.

We seem to have no trouble finding common interests to share with our kids, but finding something to share with seniors is often a challenge. Now that my grandmother has trouble putting sentences together, our conversations are pretty pathetic.  During one recent visit, she managed to tell me, "I wish you would come and spend the whole day with me." First of all, I told her she is so busy that she doesn't have time to spend a whole day with me.  She still finds plenty of things to occupy much of her time.  The other thing is that we would go nuts just sitting all day and staring at each other.  It was a "dig," and I knew that at the time.  But I do think that the sewing has been a tremendous "common denominator" that has given us something to share - even without many words.

One of the quilts I took to show to
my grandmother recently.  She loved it!

So try to think of things you can share with your senior.  If your dad enjoyed sports, maybe you can watch a game on TV together.  If your mom loved to cook, maybe you can make something she considered her "specialty" and take some to her to enjoy.  If your senior enjoys songbirds, maybe you could put in a feeder and keep it stocked... then spend some time together bird watching.  You may have to dig pretty deep to find a common interest, but I promise, you'll be glad you did!  Now, when my grandmother can't say much else, she can usually ask, "What are you sewing now?"  And we are off and running...

The Bloom is Off the Rose... Settling in at the ALF

It did not take long for the bloom to leave the rose. Tuesday morning, I did things at home that I had sorely neglected and then went to town around 2:00 to run some errands. I stopped by Southridge to give some papers to the administrator, schedule the beauty shop visits for Mam-ma - and see her briefly. She had called for a night-light bulb (turns out she had tripped the GFCI - ground-fault circuit interrupter - on her electrical outlet and didn't need a thing), and then she phoned and told Greg she needed wire pliers to unscrew the caps on her 20-oz. Cokes. He relayed the message, although he thought that was a lousy idea.

I stopped at the beauty shop and got Mam-ma scheduled for a weekly shampoo/set.  Mam-ma's beautician is a woman who went to school with us. The only available day/time is Tuesday afternoons at 2:30. I told Mam-ma if she doesn't like it, we can go back to her regular hairdresser.

As I said, things were much different on Tuesday from Monday. Mam-ma said she "liked to froze to death in the night." Her heating unit was turned off when I was there at 2:00, but the room was very warm and sunny. She had scootched a chair over by the window... I inquired... she said, "I'm freezing to death... my feet are so cold they may never warm up." I turned the heater on - and up...knowing the room would be stifling. I told her I thought Bible study was beginning at 3:00 - the little ladies were all lined up ready to go into the dining hall. She informed me she can't go to Bible study. Like an idiot, I asked why not. She said, "Because it makes me nervous." I just didn't question it.

So I went to town and changed Mam-ma's address at the post office and did my errands - and I got a few more things at her house. When I returned, she was in the dining hall, sitting with a nice little lady who is her fourth table mate. Mam-ma has been paired with two ladies from our community we have known all our lives - Evelyn, who was in a coffee klatch with my maternal grandmother; and Ruth - my 3rd grade teacher.

I got Mam-ma's key and unlocked her room to put away the things I brought, and here she came. She had a fit - I'd brought the wrong pliers. I told her that was all I could find in her kitchen drawer, and she screamed at me that it was not. I told her, "Mam-ma, those were the only pliers I saw." I also told her that this was not the way to open her Cokes, and she said it was the only way. I told her no... she should be asking her aides to do this. Well, she didn't know they would do that. I told her yes they would... and they would get her a cup of ice, too. She had ice water on her night stand - she said an aide brought it to her. So she said, "Just give them pliers to Greg."

I left, and while I was cooking supper, I called my sister about meeting to clean out Mam-ma's refrigerator. She and her husband were visiting Mam-ma. She said Mam-ma had told her that Evelyn spent the afternoon with her, and she didn't get a nap. Mam-ma told me she only laid down, but she never mentioned Evelyn to me. Suzanne called me when she got home, and she said Mam-ma's chief complaint to her was that the bed is too high - that she didn't need the box springs... just a mattress. I told Suzanne, I think we have our cousin Ricky to thank for that one. He stopped by as I was putting Mam-ma to bed on Monday night, and he went on and on about how he surely hoped she didn't fall out of that high bed! (It's not that high!)

Suzanne wanted to get her a little stool for climbing in and out of bed. I said NO WAY! It's really not too high, and I don't want Mam-ma fumbling with a stool. Suzanne said she told Mam-ma to call for an aide to help her up and to the bathroom at night, and Mam-ma said she didn't know the aides would do that. Suzanne assured her they would, and she said, "Well, I'll just call them then."

I told Suzanne that Evelyn was not in Mam-ma's room at 2:00 - in fact, Mam-ma found me at the beauty shop - she was out looking for another friend, Viola. But at any rate, we can't believe all Mam-ma is telling, because I know for a fact some of it is not true. And her room might have become cool that first night, if her heat was really off then, but she was snug as a bug in that bed. And Greg showed her Monday in detail how to run the heat/air. Yesterday, she said, "Well, I didn't know how..." So this is just a process, and I told Suzanne...we have to work through it.

I told Mam-ma I was not coming by on Thursday - that we were going to the state basketball tournament, hosted at our local high school gym. I didn't really plan to go back to Southridge again for a few days. She needs to acclimate, and I had things I wanted and needed to do - like the ball tournament.

Monday, Mam-ma casually tossed out that "you need to check my crochet yarn... there is $20 stuck inside. I don't know how it got there." Well, yesterday, I looked in her crochet yarn, and yes, one ball had a $20. The other ball had three $10 bills! So I checked ALL of the yarn for money. And we are going to check everything that has a lid or closes - Bibles, books... everything... for stashed money! She said, "I don't know how come me to put that in there." I'm just glad she thought to tell me!

My mom sent me a Facebook message to inform me that Mam-ma told HER that she had called her former housekeeper to come and get some of the clothes in the closet. She told Mom... "I think they just cleaned out all the closets!" [and took ALL of her clothes to Southridge]. I don't know why Mam-ma felt she had to involve her housekeeper. I had just inventoried her closet on Monday, and we only took the items she wanted. We did not take all of her clothes - we only took the ones on which she insisted - a closet full! I think I counted 35 blouses, 16 pair of pants, better than a dozen "suits" and about a dozen coats/jackets.  That doesn't include sweaters, underwear, socks, pajamas, and bathrobes.  I don't know if she ever really called the housekeeper... apparently Mom talked her out of it.

Greg went by the ALF at noon on Thursday, and he said everything seemed fine. She and her friends were busily eating a delicious plate of bar-b-qued pork and all the trimmings. He said the dining hall smelled like a bakery.

I didn't go to Southridge on Wednesday - my sister and I cleaned out Mam-ma's refrigerator and kitchen cabinets.  I didn't go on Thursday, either - we spoke by phone, but I didn't physically go to see Mam-ma.  Greg made a "pass-thru," and we went to the gym for ballgames instead.

Friday morning, Mam-ma called at 9:00 - she said her TV remote needed batteries and she couldn't turn off her TV in the night so she got up and unplugged it. We don't think so - the outlet is behind her dresser. We think she got her remote on the wrong button, but we took some AAA batteries, just in case. The "stinger" was still in the "out" position! I told her I was quite sure she had a package of AAA batteries - and several other sizes. She became quite irritated and said, "No I don't... I've tore this place up looking, and I don't have any." So we took some.

Greg picked up the remote and looked at it. One of the batteries was in upside down. He fixed that, punched it, and the TV came on. Mam-ma argued with him that it did not work. He assured her it did. She gave him a mild dose of what she normally gives me... that very firm, curt, "No it don't!" He tried to explain she probably punched the wrong button... "No I didn't!" she said in her most agitated voice. He also told her that the battery was in upside down, so that's why it wouldn't work. She said, "Honey, it wouldn't work before I took the batteries out!" That's when he told her she punched the wrong button. She argued that she did not! So he said, "Okay... let's just put new batteries in it to be sure they are not the culprit." She replied, "Well, I started to say, let's change them batteries."

I opened her desk for something, and there was a whole package of AAA batteries. I showed them to her, and she shrugged and said, "Well, I'm sorry I called y'all. I didn't know I had them." I told her it was okay - we had AAA batteries at home (which we had brought), so it was no problem.

Greg had taken Mam-ma a little wireless device that allows her to turn her lamp on and off from bed with a tiny remote switch. She doesn't have to get up to turn on her lamp - and she can turn it off from bed after she gets in. He showed her how it works. I said, "Now practice that a few times to make sure you can do it." She promptly turned, faced the TV, and punched the device. I said, "Look at the lamp." She nodded... yes. I said again, "No, look at the lamp and see if it went on and off... this is not for the TV." "I know," she said, nodding, and still looking at the TV and punching the device. "Mam-ma - turn around and look at the lamp - this is to turn on and off the lamp, not the TV." Finally, she did, and I don't know if she will understand how to use it or not. It's very simple, and we put it on a little "rope" for her so she won't lose it, hopefully... on the floor or somewhere in her nightstand.

Mam-ma told us she did not go to exercise class... but she walked outside. She said her catfish lunch was good, but "there is so much to do here, I can't do it all." I told her it was all optional except for bathing and eating! She also said, "Now I've got too many clothes in that closet." I had taken her some empty hangers. I told her we only brought the clothes she wanted to bring. "Well, I know, but it's too much - that closet is too full, and I can't wear all them clothes." I told her some day when I was there and had time - and she felt like it - she could pull out some things she didn't want, and I'd take them out of there. She said, "Well, I don't care what you do with them, but some of these clothes have got to go!" I had put two pillows atop her bed for decoration - on top of her regular bed pillows.  These were covered in pillowcases she embroidered herself, and I thought she would enjoy seeing them. Those are in her closet now. So she is making it her own, which is perfectly fine.

Both Greg and I thought Mam-ma was not really "with it" Friday - and then, she said, "You're wearin' my earscrews." Sure enough, I had on a pair of her red "earscrews" that she gave me the before she moved. Now, "Eagle Eye" saw that and noticed... but she can't figure out the remote switch for her lamp! Go figure!

When we got to the ballgame, I saw the mother of one of my high school classmates, and she said, "I saw Polly at Southridge a few days ago. I was down there to visit and saw her." Mam-ma has never mentioned it. The Associate Pastor from Mam-ma's church had lunch Friday with the First Baptist Church ladies (I assume) in a conference room. She did tell us that! We sat with the Baptist pastor (who is a lifelong friend) at the ballgame, and he said he tries to do that himself every few months, but it didn't work out on Friday... so he sent the Associate Pastor.

The pastor-friend said that after I told him last fall we had told Polly no more peanut brittle making, he went by her house to visit one day, and she and Ruby were in the kitchen - making peanut brittle. I'm sure he was in a quandary about what to do. He said they had quite the discussion about Polly's peanut brittle vs. his mother's and how his mom "pulled" hers to help it spread in the pan after cooking. He said if you closed your eyes and didn't pay attention to the thickness, his mother's and Mam-ma's tasted virtually identical. I told him that when my sister and I cleaned out the kitchen last week, we found corn syrup and peanuts in several places in the kitchen - Mam-ma's private "stash!"

Friday, we stopped by on our way to the gym to visit with Mam-ma and see about her remote control. We told her if the teams won that night they would play next weekend in Hot Springs. Greg said, "We'll just about have to go if Heber Springs is in the STATE finals!" Mam-ma never missed a beat... she said, "Well, y'all just go on... that'll be fine... you don't have to worry about me any more, so just go on!" Now first of all, we weren't asking permission, and secondly... don't have to worry about her any more? PahLEASE!!!

Saturday, it was stamps. Mam-ma called around 9:00 a.m. to tell me that she had written a letter and couldn't find her postage stamps. "They are in your desk," I told her. "No, they aren't!" she retorted. I assured her they were, that we took everything out of the top compartments and put it in a desk drawer for the ride to Southridge... then I tried my best to restore the contents to their rightful places. "I'm sure that I didn't get things back in the right spots, but it's all there." "Well, it's not," she informed me. I told her to sift through her things like dealing cards, and I was sure she would find the stamps. She assured me she would not, because they were not there. I said, "Do you remember telling me your AAA batteries were not there, and I showed them to you in your desk?" "Well... good-bye," she said! "Good-bye!" I replied. At least she didn't hang up on me.

Sunday night about nine, Mam-ma called me - did I not leave her any toilet paper? I told her Southridge furnishes TP. She said, "Well, I thought you told me that we would have to get our own." She went on to explain that James, the maintenance guy, moved her toilet paper dispenser in the bathroom on Saturday - he didn't think she could reach it on the wall. I told her that is why Southridge provides the toilet paper - they want the residents to use their dispensers. DUH! Anyway, we got that cleared up well enough, I guess.

Then she told me, "I tell you what, I just can't keep eating like this... I'm a gaining weight!" Now, she needed to gain a little weight, and I told her so... and I also told her she will work it off walking the halls. She said, "Well, if I can ever get outside..." I told her "Mam-ma... there are acres of hallways in that place... just walk inside." She said she had been, and that the food is delicious, but there is just more of it than she can eat - and it's making her fat! I assured her that she will get into the groove with exercises and walking, and that the food will help her gain strength and feel better... so EAT UP!

I thought Mam-ma was in a pretty good mood Sunday night, but today was another story. We went to Wal-Mart to buy her a flat-screen television, and while checking out, she called and said, "I need you to pick up some B-12 at the drugstore... the nurse is going to call it in." I tried to explain to her that she had two vials of B-12 at the nurse's station already... along with syringes, sterile pads, and more... and nothing needed to be ordered. She added... "Well, I need you to go to the house and get my Woolite, so I can wash my undies." I had taken the Woolite home with me when we cleaned out the cabinets. So I turned around and went back into Wal-Mart and bought more Woolite.

Greg got the TV set up, and I talked with the nurse and straightened out the confusion on the medications (hopefully). Greg showed Mam-ma how to use the new remote control, which is pretty straightforward, and she informed us she cannot get the channel where she watches "Wheel of Fortune." "I guess it's not on any more," she said. Now that happens to be a local channel, and it is indeed on each night. Greg showed her where to find it. She said, "Well, as long as these books hold out, I'll probably just read anyway."

I honestly think that she will come to enjoy the television and the nice, big, bright picture. She had told the aides one day last week that she wanted her bath early in the mornings. When the aide came today to help her bathe, she said, "Can I have it tonight after supper?" The aide graciously accommodated her. I figure that things are going a whole lot better than she wants me to know... and I can see that she is being pampered. Her room was spotless... the housekeepers had been there. The bed linens will be changed and laundry done tomorrow. The food is fantastic. She is safe, warm, and surrounded by people. She says she is learning to use the little remote switch for the lamp. I opened the desk, and there were her stamps. "I see you found your stamps," I commented. "Uh-huh!" she answered, quickly changing the subject.

We made our "good-byes" and suggested Mam-ma take a nap. Her nurse said she would give her a B-12 injection later (which usually perks her up fairly quickly), and there is no telling what all she will do this afternoon/evening - or who she will see. One thing is for sure... we'll never know the half of it... at least not the half that is good!

We Have a Date!

It's official! Move-in Day at the Assisted Living Facility (ALF) is Monday!  We are beyond excited... although when I phoned my grandmother and asked, "How would you like to move to Southridge on Monday or Tuesday?" she replied, "Well, it don't matter..."  Oh, yes, it does.  In the words of my witty cousin Natalie, "Oh, yes!  Your 'good clothes' are labeled, and we're moving!"

We got official confirmation from the appropriate offices at Medicaid - in writing - so all systems are "GO" for a move-in on Monday.  My husband and I will start bright and early that morning, and with help from my sister, we hope to have Mam-ma settled in her new apartment by dinner time.

Mam-ma asked me... "Who's gonna help GREG move me?"  I told her, "I am!"  She replied, "YOU are!  Hmmpphh!  Well... y'all just beat all I've ever seen!"  Mam-ma doesn't think I am able to do anything "physical" or "manly".  I assured her that Greg and I have moved numerous times, and "we've got this down to a science!"  She just laughed.  She will not believe it... probably even after we have her settled.

So we are resting and relaxing as much as possible and preparing for a busy week... but one that will have tons of benefits, I'm sure.  Pray for all of us... especially Mam-ma as she makes this monumental move... and I'll keep you posted.

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Meanwhile, the mother of one of my dearest friends has been hospitalized with bleeding ulcers.  At 85, this woman has a number of health issues, and my friend is concerned about her present living conditions.  She said, "I don't even know where to begin to get help." 

I told my friend that admission to an Assisted Living Facility (which would be ideal) could take several months.  Meanwhile, her mother needs help now.  I recommended Home Health services, some sort of "life alert" device, and Meals on Wheels.  I gave her the contact numbers for these agencies.  I also recommended that she begin to get her mother's papers and finances in order.  She was astounded at the list of papers I suggested she assemble, and she made notes accordingly.  I pointed out that she will need these for any applications she makes... and, should something happen to her, these papers would need to be centrally located anyway for the person charged with her mother's care.

Here is the list of things I suggested she have handy:

• her mother's living will - attached to the refrigerator door where EMTs and other official personnel can readily see it
• a complete list of medications and information for her mother, known allergies, past surgeries and major illnesses, insurance contacts and membership numbers, contact information for next of kin, and notice of living wills, DNR orders, etc.
• a copy of her Durable Power of Attorney (DPOA)
• a copy of her mother's birth certificate
• proof of life insurance, pre-paid funeral plans, and other policies/pre-paid items
• a list of all physicians who care for the patient - and their role, i.e. primary care, cardiology, internal medicine, ortho, and more.
• special notices, like "George has a pacemaker" - "Mary wears upper and lower dentures" - "Joan is blind in one eye" - "Pete can't hear without his hearing aids".  I pointed out to my friend that she needed to note her mother's bleeding ulcer, so emergency personnel would not misunderstand excessive bleeding... and her vascular dementia and numerous medications, which could cause slurred speech that might be mistaken for a stroke at first glance.

It would also be good to have a list of all checking/savings accounts - and account numbers, recurring bills - both those paid directly and those auto-drafted, and other recurring payments.  If Grandpa always makes an annual donation to his cemetery board, you need to know when this is done - and how much he pays.

My friend was astounded at all of the paper work that is required for even seemingly simple tasks and applications.  It can be daunting... particularly the first time.  I told her that "this is not my first rodeo," so I guess I have somewhat acclimated to the paper trail demands.  For me, the key is to try to maintain some semblance of organization.  Knowing where the documents are located and how to access needed information quickly is more than half the battle. 

I'm not surprised that my experience with my grandmother is already coming in handy to help others.  In fact, I had hoped that in some way, I would be able to utilize all of this "knowledge" to help others.  I just didn't know it would begin so soon!

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If you have experiences you would like to share that you feel can help others, please contact me.  This needs to be an interactive blog in order to be more effective.  I look forward to sharing your stories, your burdens, and your joys here.  Please come along for the journey!

The Waiting Game...

We are still playing "The Waiting Game," and quite frankly, I think we're all a bit sick of it.  The Medicaid nurse did make it to my grandmother's house to evaluate her on Tuesday, February 9th.  She approved her for admission to the Assisted Living Facility, based on her age, the fact that she mixes up her medications, the three visits she has already had to a nursing home for rehab following falls and the flu, and a few other things, such as the fact that we hire a housekeeper to assist with duties that Home Health staff cannot perform.

This was a huge milestone... and it was no small feat to accomplish - from getting the orders for the nurse to visit to actually meeting her criteria.  Nobody can believe my grandmother is 98 years old by just spending an hour with her.  She walks well, speaks clearly and makes sense, and she even heard clearly this particular day.

So we now wait on DHS to approve this move, based on the nurse's recommendations.  Mam-ma grows more anxious by the day.  Yesterday, she decided maybe she walked too well when the evaluating nurse asked her to walk across the floor.  "I should have had you bring me my walker," she said.  Instead, she got up from her couch and walked to her dining area and retrieved the walker herself, pushing it back toward the nurse.  I assured her that this had no bearing on why we are still waiting.  It's something new every day.

The day after the nurse visited, we had a mega snowstorm... some 9+ inches of snow that is still melting.  So very few people made it in to work on Thursday - or even Friday.  I don't know if the DHS case workers were in the office or not.  That probably cost us some time in getting this move scheduled.

Saturday night, Mam-ma assured me that she was not going to church on Sunday morning.  We agreed that,while her streets were fairly dry, the parking lots might have "black ice" and slick spots.  She said, "I know Geneva (a friend who is nearly Mam-ma's age) will want me to ride with her, but I'm not going."  Sunday morning, my mom called me... "I cannot get your Mam-ma on the phone.  She probably went ahead and went to church, but I thought you should know."  I looked at the clock... 11:20 a.m.  Church would be over around 11:30. 

We had not gone to church, but I hurriedly dressed and began calling in earnest around 11:40, when I thought Mam-ma might be home - if she went to church.  At 11:45, still no answer.  As I started out the door at 11:59, I tried one last time... she answered.  "So, you did go to church?" I asked.  "Yes.. Geneva just insisted I go, and my streets were dry, so I thought I just as well."  I reminded her that the streets were not what worried me - it was the parking lot.  "Well, it was dry!" she retorted.  "Doesn't matter..." I told her, "you're there and back in one piece, so that's what matters.  But you've had people from here to California looking for you!"  (My mom is in California with her husband, tending to his brother, who is on Hospice.)

I told Mam-ma that since she had said she was not going to church, it had worried me a little, even though I figured that was where she went.  We hung up, and about an hour later, she phoned me... "I'm sorry I worried y'all, but Geneva just insisted I go to church with her, and she wouldn't let up, and I didn't know what else to do."  I assured her it was over and done, and everything was okay.  I am not certain that Geneva was so insistent as much as Polly just really wanted to GO... but nonetheless, she was now home safely.

Another thirty minutes went by, and Mam-ma called again... "Do you think it would be okay if I went out for a walk?"  I told her to stay on the main street in front of her house, and she should be fine.  "Don't go on any side streets... those are shady and may still have ice on them.  We still have ice on our back deck."  Okay... she assured me she would not get off her main street.  When I talked to her later in the evening, she told me she had walked over to her neighbor's, and "... you know what?  There was still ice on the street!"  I questioned... had she stayed on the main street?  Well... yes and no.  She had walked across the main street to visit a neighbor, then she came back to her house and took a walk down a side street.  "And it was icy?" I questioned.  "No, no, no!" she replied. "It wasn't icy... it was just wet."  Now, she had already told me the street was icy, but she glossed over that.

My mother e-mailed me later and said she had spoken to Mam-ma briefly,  but she was so put out with her over going to church after she told me she wouldn't that Mom got frustrated and didn't talk long.  Mom said, "She's going to go to Southridge alright - but it may be to the nursing facility instead of the assisted living!"  I told Mom that my husband and I have concluded that we have done all we can do to keep Mam-ma safe... if she hurts herself now before the big move, it's on her.

This morning, I stopped by Mam-ma's to take her some chicken stew I had made... something she really enjoys.  She told me last night she was eating bread, sorghum molasses and butter for supper.  She has chicken pot pies in her freezer, but she didn't want those.  Anyway, when I arrived this morning, her Meals on Wheels delivery had arrived, and the milk, dessert and fruit were on her table... but no meal.  I saw a big container of what appeared to be chili or vegetable soup on her counter.  "You not having your meal today?" I asked as I slid the stew into her refrigerator.  "No..." she answered.  But the meal wasn't in her fridge.  Finally she said something about... "I just set that in the microwave."  I opened her microwave, and there was the hot meal... chicken spaghetti, green peas, and mixed vegetables. 

I told Mam-ma, "You can't leave this in your microwave... it will spoil!"  This explained another time when I happened to open her microwave, and she had left a meal in there overnight.  Somehow she doesn't get the connection that food cannot sit out like that and still be safe to eat!  SCARY!!!  I put the tray in her refrigerator and told her, "When you get ready to eat this, get it out and microwave it!"  She said she would.

So we are taking it one day at a time, and praying that the approval for a move comes soon.  With a week of temperatures in the high 60's, this would be an ideal time for moving.  But we will just have to see what happens.  Prayers for a quick move-in time would be greatly appreciated!

This Belongs To...

We are in a "holding pattern" on the big move to the Assisted Living Facility (ALF), known as Southridge. I have done all I can do on my end... the rest is up to DHS. The life insurance check arrived in the mail yesterday - one more piece of the puzzle is set. My grandmother is getting antsy... she is ready to move, and the longer she sits and stews, the more anxious she becomes.

Today, I am going to my Mam-ma's house to start labeling her clothing and the things she plans to take. In true "Mam-ma style," she started without me. She told me last night she had been labeling her underwear. I questioned... did she use a "Sharpie" marker? No... she didn't know what she used. Now, I know she owns a Sharpie... we use it to write the name of her "nerve pill" on the cap of the medicine bottle so she can distinguish it from the others. I told her, "I hope you used something waterproof, or all of your hard work will come out in the wash." She said, "I hope so, too!" Finally, I was able to determine that she did indeed use the "Sharpie" marker she keeps for her medicine. I asked her not to label anything else... I said, "I'll be happy to do that for you."

I also told her that I will clear a closet today, so that she can start hanging clothing there that she knows she wants to take with her. It will give her something to do. Nearly every day, she is telling my mom on the phone that this is "too much for Debbie." Mom has assured her that it is not... that a lot of the "after" work will be done when she returns in March. And as far as Mam-ma needs to know, that's the truth.

The other interesting dynamic has been the input from others. Almost daily, Mam-ma's Home Health aides are telling her this or that about "how it will be at Southridge." Much of their information has been innacurate. One aide told her that Home Health could still come and care for her in the ALF. If you are a "private pay" resident, you could probably pay Home Health to sent out aides. But Mam-ma is not a "private pay" resident, and her care is included - and provided by Southridge. Another aide told Mam-ma that she did not need to take linens... bath towels, etc. - that these would be provided. So Mam-ma was not happy that I spent her money on new towels. I assured her that our "Resident's Manual" clearly states that bed linens, towels, toiletries, etc., are the responsibility of the resident and not provided by Southridge.

Mam-ma's friends are asking her continually, "Polly, when are you moving?" Polly doesn't know, and this is getting on her last nerve, understandably. I know people mean well... and these people all love my grandmother dearly... but they don't realize that she is already a bundle of nerves, and more care needs to be given to what is said to her about the move at this point.

Hopefully a Medicaid nurse will come soon to evaluate Mam-ma. Hopefully she will deem Mam-ma a suitable candidate for Medicaid coverage for this move. Hopefully the DHS case worker will complete her paper work quickly once the nurse's report is filed. And hopefully, Moving Day will come very, very soon!

Meanwhile, we'll keep labeling...

Fun With Bureaucracy...

My grandmother has a history of telling one person one thing, and another something else. So I was not surprised when my mom told me that Mam-ma was telling my cousins, "Debbie is taking me to look at a room at Southridge (the assisted living facility) next week." She had told me that she wanted to think about it, and that the room "was too small" and too dark. So I called her and asked, "Are you wanting to go look at Southridge?" She replied, "Well, I don't want to, but I think I better. I may not be happy there, but I'm not happy here, either." This was the first time she has flatly admitted to not being happy.

I told Mam-ma I would call and talk to the administrator and set up a time for us to take a tour. I called right away, and the administrator told me that there are now no fully-funded Medicaid rooms available. In the time since I first visited with her, she has "given them all out." I asked about a waiting list, and she said there was no one on the list at this point, but she didn't foresee any rooms coming available anytime soon. I asked to be placed on the list.

I explained to Mam-ma that we may have to move very quickly if a room comes open. There won't be time for her to waver back and forth... she will have to take a look and either say "Yes" or "No." The administrator did tell me that we could get one of the mid-sized rooms (which has 355 square feet vs. 248 sf for the fully funded room). This room currently costs the family an additional $500 per month, regardless of what Medicaid pays. That is in addition to any "incidental" expenses Mam-ma will have, which I am tallying at about $300 per month for such things as her medicine co-pay, getting her hair done, personal toiletries (toothpaste, mouthwash, soap, body lotion, etc.), toilet paper, candy, cookies and soft drinks, her telephone bill, and more. We have no guarantee that the $500 per month currently being charged might not rise at some point. Once we make the move and Mam-ma empties her house, where would she go if we deemed this to be too expensive?

So we are waiting for the fully funded room, and Mam-ma is managing. The lady in her Sunday School class who my mom felt would become a new "designated driver" did indeed drive Mam-ma to church last Sunday, since Mom was out of town. She also drove her to the Senior Center for lunch one day this week. And Mam-ma has not complained too loudly about being lonely or "looking at the four walls," although she does tell me often how much she misses going places with Ruby.

Last week Mam-ma told my mother that she had not seen anyone all day... except her deacon, the Meals on Wheels delivery person, and her Home Health aide! She is also continuing to forget to take her medication - or mixing it up some. She tells us she took it, but it's still in the compartments when I check on Fridays. Her response is always, "Well, I'm sorry." I've told her, "Don't apologize... just go take it!" This week, she said "I didn't take my noon medicine, because the box was empty. I may have taken more than one dose at a time." I told her to go to the Friday box and take the medicine in it, and I would fix it on Friday. She said, "There are three half tablets in Friday's box." I have pretty well decided she has dropped the container a couple of times and tried to replace the medicine herself... with mixed results.

Last week, Mam-ma called to tell me that her semi-annual pacemaker check had been set for Wednesday, December 8, at 1:15 at our local hospital. I made a note on the calendar. She said she got a letter about it. Then she called on Friday and said there was a telephone message and, "My pacemaker check has been changed to Friday, December 10, at 11:30 a.m. - in Searcy." (30 miles away) I called the number for the pacemaker technician, and she said that she could not explain the phone message about December 10th, but the appointment was for Wednesday, the 8th, at 1:15 - and it was at our local hospital.

Mam-ma was to have her semi-annual checkup with the cardiologist this past Wednesday at noon - in Searcy. As my husband and I dressed and got ready to make the trip, I decided that I should call and confirm the appointment. Now, I had done this two weeks ago when we went for an echo cardiogram. But nonetheless, I made a call. The receptionist said, "No, that appointment has been rescheduled." I said, "You have got to be kidding." She said... "Well... let me check. I'll connect you to the scheduler." She put me through to a voice mail machine for another cardiologist. I called again. She apologized and tried a 2nd time... this time reaching the voice mail for yet another cardiologist. I called a 3rd time. I explained that we were about to walk out the door, and we really needed to know about this.

The receptionist said, "Well, I know your appointment is not today, because the doctor is out this week!" She said she would check on things, and the next person I spoke with told me that Mam-ma's appointment was now scheduled for Friday, December 10th, at 11:30 a.m. It was all coming together. She said, "We spoke with you on November 15th." I assured her no one had spoken with me. She said, "And we sent you a letter." I told her if Mam-ma got a letter about the appointment change, she had not mentioned it.

I also told the girl that we already had appointments for that Friday, and she cut me off and said, "I don't mean to interrupt you, but we are booked solid through March. That is the only appointment we have available until then." I wanted to scream, "My grandmother could be DEAD by March - she is 98 years old!" But instead, I told her "Fine... we'll take it and I'll reschedule her other appointments." She said, "Now if that won't work, we could talk to the nurse and maybe work her in some other day." I know what that means... sitting for hours on end in the waiting area for a spare minute. Mam-ma is not up to that. Just going to the beauty shop tires her these days. So I assured the scheduler we would be there on the 10th.

As I had done with the pacemaker tech, I asked this person to make me the point of contact for phone messages and letters about appointments. She reviewed my address and phone number and said, "That's where we send everything already." I told her no... I had never gotten any of the messages... they all go to my grandmother. She said she would make the changes on Mam-ma's records... we will see.

With an unplanned day suddenly available, I decided to tackle enrolling Mam-ma in a new Medicare Part D Prescription Drug plan for 2011. You would think that after 5 years, I would have this down pat... NOT! I still had to call the Medicare office in Dallas to make sure I was understanding the information correctly... would someone with extra help be required to pay premiums and deductibles? The answer was no... and ultimately, my choice came down to finding the plan that covered all but one of Mam-ma's meds (an anti-anxiety medication that has never been covered) and had the lowest co-pay.

My frustration came not from the process itself... and certainly not from the extremely helpful Medicare rep, Anna. The problem resided in the Medicare.gov website. More times than I can count, the site "timed out" on me, and I had to go back and re-enter my "code" to access my drug list and start the process again. I was taking time to compare plans... or talk with Anna on the phone... or look over the details of a particular plan. I would sometimes get a screen that "you are about to be timed out," but more often, when I tried to return to my list of plans, I had to start almost completely over. So even though I feel like I understand this process about as well as anyone, it still took more than two hours.

But we have Mam-ma enrolled, and I think we have her appointments straightened out... although I will be calling a few days in advance this time. What if we had taken off from jobs to drive her to Searcy? I have to believe that the staff knew 2 weeks ago when were in the doctor's office that he would be "out of the office" this week. Maybe not... but it's highly suspicious to me.

All of this makes me wonder... what do people do who have no one to help them? Mam-ma gets things so confused these days, and were she still able to drive, I seriously doubt she would think to confirm an appointment before driving 30 miles for it.

In fact, we've done this ourselves... early on in our caregiving. We drove to Searcy one day for the echo cardiogram, and no one had called to tell us that the "tech" no longer performed these on that particular day of the week. After Mam-ma threw a little fit and told them we had driven 30 miles, they were able to locate a "tech" who happened to be shopping in town, and she drove over and did the 15-minute test. I learned then to always call and confirm... and usually I call the day before an appointment. But having just been there 15 days earlier and confirmed, I let it get by me. And I realize now that Mam-ma confused the pacemaker check info with the rescheduling info, so in some ways, it was as much our fault as theirs in this instance.

So what does this all mean at this point? We are just taking things one day at a time. Mam-ma seems to have made a better adjustment to not using her stove for cooking than I would have ever anticipated. She has not fared so well with the fact that Ruby can no longer drive her around. Someone asked me last week how she was doing with this, and I said, "Not well. I have seen a noticeable decline in Mam-ma since the wreck." I believe this is mostly mental... a mindset... but it's there nonetheless. She seems defeated, tired, and much older in recent weeks. My hope is that she will remain healthy enough until a room does come vacant for her at the assisted living facility. My goal is still to avoid the nursing home.

This is all pretty much out of my hands at this point, and I've come to terms with this fact. We will all be gathering for Thanksgiving next week at my mom's, and I am looking forward to spending time with my family and enjoying this day with my grandmother and Timothy... watching the generations interact, and making memories in the process.

Each day is a gift at this point... and for the moment, Mam-ma seems to have mellowed a bit in her temperament. Last night when I told her to be watching for her new prescription drug coverage info in the mail, she started to cry and said, "I don't know how I'll ever pay you for all you do for me." I told her, "Your my grandmother... you don't have to." She persisted, and I said, "Look, if you had to pay me, you couldn't afford me, so just be glad you're my grandmother!" We both laughed, and she moved on to another topic.

I am grateful that I am in a position to help her... and I do often wonder how on earth other people manage. My husband says half the clients on his Meals on Wheels route are nowhere near as well off and able as my grandmother... and many don't have anyone to see about them, save maybe a Home Health aide a few mornings a week. Some don't even have that.

Our culture has not kept up with the issues that face aging Americans. And as a gerontologist pointed out to me last summer, much of this is because Americans now live far longer than they once did. People like to talk about how "We used to keep Mom and Dad at home and take care of them until they died." Well, Mom and Dad only lived to their mid-fifties. We honestly are not equipped, in many circumstances, to care for parents and grandparents who live well into their eighties and nineties. I know there are people who are working to bridge the gap and improve things, but some days, the process seems pretty darn slow. And when you factor in the bureaucracy and the bumbled schedules and websites that are not user friendly, it's hard to see progress.

In the words of Scarlett O'Hara... "Tomorrow is another day..." and for me, it's "beauty shop/errand day"... wish me luck!

Who Decides?

By the time beauty shop/errand day rolled around, the week had already been quite busy.  On Monday night, Greg and I hosted a "family dinner" for everyone - Mam-ma, my mom and her husband, my sister and her husband, and my niece, her boyfriend, and baby Timothy.  Afterward, Timothy spent the night and most of the next day with us.

Tuesday evening, Greg and I had an appointment at our church to have pictures made for the new church directory.  I had scheduled an appointment for Greg's mother 10 minutes after our appointment, so she rode with us to the church.  But when we got there, her name was not on the list.  I told the volunteer, "I know I scheduled her for an appointment," and then Greg's mother said, "Yes, I made one, too."  "What?  You made an appointment?  Why didn't you tell us?"  Her reply... "Well, you said you made an appointment, so I just didn't think I needed to worry about mine."  I went to the church office and tried to find her name on a schedule sheet for another day, but I was not successful at first glance.  Meanwhile, she and Greg decided that we should all three be photographed together, which was fine ... and that's what we did.  I am still not sure why she felt it was unnecessary to tell us that she had made an appointment and duplicated our efforts.  In the end, the pictures turned out really well, and it will apparently all work out just fine.

Friday, I got to Mam-ma's house, and she was working on the new baby quilt.  Mom had taken her to Wal-Mart on Monday evening before coming to our house for dinner, so that Mam-ma could pick out new quilt batting and backing material to replace the fabric she ripped off the week before when my sister tried to help her.  Apparently this quilting set-up is still not perfect, but working much better than what my sister helped assemble.  Mam-ma had already quilted around several of the Winnie-the-Pooh characters.

I sat down at the kitchen table to dispense medicine, and atop the grocery list was an old, used tube of some sort of prescription cream.  I recognized the tube, and on the grocery list was "itch cream".  I told Mam-ma, "We've already tried this... the pharmacy said the prescription was so old that they could not refill it without asking the doctor, and when they called him, he said we would have to come in for a visit first."  Mam-ma glared at me.  I continued, "I am not taking you to the clinic for itch cream and risk you catching the flu or some other bug."  "But I need it!" she whined.  I reminded her that we had talked about this before, and I had gotten her hydrocortisone cream as a substitute. 

She glared at me and said, "Well, if you itched like I do, you'd understand how bad I need that!  It works so much better."  I told her, "I itch nearly every day because of my allergies - I do understand.  Use the hydrocortisone cream."  She said it "wears off."  I countered... "Re-apply!"

I suggested that the next time a Home Health nurse comes by, Mam-ma should ask her to call the doctor's office and see if she can get the cream refilled.  But I am not taking Mam-ma to the clinic for an itch cream.  I would not take myself for that reason, and it's not worth exposing either one of us to the potential germs and viruses that might be represented at the clinic.

I took the name of the cream with me to the pharmacy at Wal-Mart and asked what OTC substitute he would recommend - hydrocortisone.  So she has a new tube.

Meanwhile, I'm doling out the meds, and Mam-ma says that her friend Ruby is "going stir-crazy."  She added, "She's like me... she needs to get out and go somewhere and do something."  I laughed and said I guessed I was just different, but I can stay home for days on end and never get bored.  Mam-ma said, "Well, that's because you don't like flowers."  I do like flowers - but I don't care about gardening, and I told Mam-ma this.  She replied, "Well, I love to work in my flowers, and I feel better when I garden.  My muscles are not as sore, and I just do better."  I replied, "You know...  they said you could garden at Southridge."  She retorted sharply, and at a loud, high pitch, "I'm not a-goin' to Southridge!"  I laughed and said that was fine ... I was just saying that the lady told me they had two gardens and that Mam-ma could bring her shovel and other tools and "garden" there. 

Mam-ma came over to the table and stood over me and asked, "Do you want me to move to Southridge?"  I told her no... I wanted her to be happy - and to be safe. If she is happier in her own home, that's where I want her as long as she can live there safely.  She then asked, "Well, just who decides whether I go to Southridge or not?"  I told her she does.  "It's your decision."   She glared at me, and I just smiled at her.  "MINE?" she asked.  "Yes..." I answered, "whose did you think it was?"  "YOURS!" she retorted.  I explained that as long as she was mentally capable of making decisions, the choice was hers.  Should she become unable to think clearly, then yes, I would decide.  But for now, the choice was hers.  She replied, "Well, I'm not a-goin'!"  I told her that was fine.

Later that day, I saw my sister at Wal-Mart, and she said, "Oh, I had quite a conversation with Mam-ma last night.  She told me 'Y'all have taken away all of my privileges, and I've not been able to get it together since.  I can't cook any more, and you know I love to cook!'" (another thing she could do at the assisted living facility)  My sister tried to remind her that she could still cook - but only when someone was there with her to help.  She didn't acknowledge that.  Then she told her "A lot of that food they got for me (meaning Meals on Wheels) I can't eat."  My sister chided her about how she probably wouldn't starve. 

For clarification purposes, my sister is the "golden one" who can get by with saying things to my grandmother that I cannot.  On a few occasions she has filled in for me when I was sick and taken Mam-ma to the beauty shop and run the errands.  Mam-ma usually cooks my sister lunch beforehand - and buys her groceries at the store afterward.  I neither want nor need the lunch and/or groceries, but I think you get the picture of how this all goes.

So my sister said that she tried to explain to Mam-ma that we are only trying to keep her safe and out of the nursing home by asking her not to use her stove any longer - and she pointed out that she can still use her microwave and toaster.  Mam-ma flatly told her she had no intention of going to the nursing home!  This all gave me huge insight into why she had so quickly flown off the handle to me about going to the assisted living facility... it was continuing the thread of the previous evening's conversation!

After we had church pictures made on Tuesday, we went by my grandmother's to check on her.  Catching her off guard, she was more alert and able than when she knows we are coming!  She was smiling and happy to see us - and of course, a lot of that was because Greg was with me.  She told us how good the Meals on Wheels lunches were, and that she had really not had anything bad yet. (She told my mom that her lunch on Monday - chicken strips - was "horrible - the worst one yet!")  She is telling us the lunches are good - but she is telling everyone else how bad they are - sort of a reverse of the way she normally complains to me and tells everyone else how things are fine.

Mom and I tallied this week alone, and Mam-ma had a big dinner at our house on Monday, pork chops and gravy for dinner at a cousin's on Wednesday, and Mom took her butter beans and cornbread another night for dinner.  Then Saturday night, Mom made vegetable soup and took her some.  Mam-ma had already re-heated the rest of her Meals on Wheels lunch, but she told me, "I'll toss that in the dirt - I ate the soup instead.  It was delicious!"  So she is eating well - and in no danger of starving!

An elderly cousin telephoned me one night last week, and we talked about the situation with my grandmother.  He lives in a condo on the campus of the assisted living/nursing home facilities.  Before his wife died, they shared an apartment in the assisted living facility for a while, so he is quite familiar with the facilities and what is available.  He told me, "Anyone in town with any sense would wonder why on earth your grandmother is not already at the assisted living facility."  He was not being unkind, or implying I am using poor judgment - he knows my grandmother about as well as anybody.  He was merely pointing out that I should not feel badly if she has to move there. 

I asked him, "Does this mean you are on my team if I need reinforcements to encourage her?"  He assured me is is indeed in my corner.  I took this as one more sign that I am not off base in making preparations. 

Honestly, we are feeling like it may be sooner than later that this move occurs.  My cousin said, "Two weeks of living there, and I bet you wouldn't be able to get your grandmother to move back home."  He thinks she would really enjoy the company of others and the activities there. My mom doesn't buy it for one second.  I am just not sure.  I want to think my cousin is right, of course.  And I know that Mam-ma will never admit to me that she likes it, even if she is having the time of her life.  But I have to believe that my philosophy is right for now - as long as she is relatively safe and able to live in her home, she should live there.  The minute that changes, she should move.  The question of "who decides" will be determined by these factors.  Ultimately, the decision maker will probably be me... and I'm okay with that.

Meanwhile, my mother-in-law has returned to her family physician for a follow-up visit.  Her sacroiliitis is better, but her dizziness is not.  The doctor changed her blood pressure medication, added a diuretic, and scheduled her to see a cardiologist and a physical therapist.  There is apparently new therapy that may help with vertigo, so the doctor wants to try it and see if this helps with the dizziness.  Three mornings this week of therapy, then another doctor's visit at week's end.  Greg maintains that the doctors will find something to treat, even if there is nothing really wrong.  He is monitoring this closely, because our past experiences have made us wary of all of these tests, diagnoses, and treatments.

Friday, I was running errands with my grandmother while Greg was taking his mother to doctors and therapists.  And so the cycle begins anew.  Friends came from out of town to visit us this weekend, and they asked, "So what have you been up to?"  Grandmas and babies... with "life" sandwiched in between.   The complexity of the layers changes daily, but the components stay pretty constant... at least for now.

Throwing Out the Towels

I was reading back over a few recent posts and saw something about towels my grandmother had placed on the floor as "throw rugs" in the areas leading from her kitchen/dining room to the carpeted living area.  We've argued back and forth about how she is not allowed to have loose rugs on her floor because they are a hazard that could potentially cause a fall.

Friday, the "red towel" was once again across the threshold from her kitchen to the hallway.  I quietly picked it up, folded it, and placed it on her clothes dryer.  The next time I find a towel or throw rug on the floor, it's going in my purse!

I Baked a Cake

Today, my husband went by to visit my grandmother after he delivered Meals on Wheels.  They talked about her getting them and how it was unsafe for her to cook.  She told him, "I baked a cake this morning, but that girl was here."  We assume she meant her home health aide.  Anyway, my husband shared their conversation over lunch ... how they discussed her not having any more vegetable gardens, and no peanut brittle making ... and no cooking unless someone was there.  He forgot to mention the cake to me.

So when my mother e-mailed and said Mam-ma had made a cake, I told him, and he said, "Oh, yeah... she mentioned that and said 'that girl' was here."  I called my mom to tell her it was okay - the aide was there.  Mom said, "NO!  She told me that the girl had left!"  She also told my husband that all she had left to do was ice the cake. I'm thinking buttercream frosting - Mom says she makes a "boiled" icing on the stove.  Yikes!

So much for being scared by burning the dried peaches in the crock pot - much less listening to anything we told her about not cooking unattended!  Thankfully, Mam-ma's deacon visited her last night and took her a supper of black-eyed peas and turnip greens - and he took home his peanuts and corn syrup, along with the recipe for making peanut brittle.  He spoke by phone with my mom today, and when she told him about the cake, he said, "You are kidding!"  He was planning to return her recipe book later today and have another talk with her about not cooking any more! 

Meanwhile, I've spoken with cousins who sometimes take her out to dinner and bring her peanuts and sugar to make peanut brittle.  At first my cousin thought I was asking him NOT to take her anywhere, but I explained that no... out to eat, or giving her a ride to Ruby's house was fine.  But taking her to the grocery store or helping her "make a garden" was out of the question.  I hope he understood.

I know it's hard for people who don't know the whole situation to grasp this.  For one thing, my grandmother seems so able bodied and "talks a great game."  And she has no problem telling people, "I'm just a poor old widder woman who can't drive any more."  She also has told me directly that she tells others that "... my kids don't care anything about me.  They've got better things to do than see after me."

So another day brings more "fun."  I have my doubts that this is going to work for long, but the Meals on Wheels may begin as early as tomorrow.  I'm planning a family dinner for next week - and I plan to use some food from her "deep freeze."  I'm also going to call the assisted living facility administrator and tell her that - for now - we do not want the room she has available."  Something tells me this may be a very temporary fix.

Hard Choices

If I've learned anything in the last two weeks, I've learned that a lot can happen in a short period of time, and everything is fluid.  My mother-in-law has continued to show improvement, for which we are grateful.  My grandmother's cough is much better, and after eight days with absolutely no voice, mine has returned enough that I can communicate verbally again.  Hopefully a full recovery is imminent!

Meanwhile, my grandmother's friend Ruby has not improved as much, and a subsequent trip to visit her family physician revealed that she cracked two or three ribs.  The doctor increased her pain medication and told her it could take as much as six weeks or more for the ribs to heal.  She is, understandably, very upset and discouraged.

Once my voice returned a little, I made the visit to our local assisted living campus to determine what our options were and what might be possible for my grandmother.  The administrator told me almost immediately that the facility had enacted a new policy the previous week, and now all Medicaid-subsidized rooms cost an additional $500 per month, paid by the client or his/her family.  I was dumbfounded and told her I felt there was no way this could work for us.  I had been told that the facility would accept whatever Medicaid would pay, based on my grandmother's "Tier assignment" - plus the difference up to $2600 for a suite or $3000 for an apartment.  I was thinking we could make this work for the "suite" with her monthly Social Security income.  I have to admit, I was pretty devastated.  I explained to the administrator that I was concerned for my grandmother's safety and well-being in her home, but she was not yet ready for the nursing home.

After talking a little more, I learned there are other options.  First the administrator asked me some questions about my grandmother:

• could she feed herself (yes)
• could she transfer herself from bed to chair (yes - we're talking a woman who still walks around the block in her neighborhood most days)
• could she handle her own medications (only with help - I dispense them and we prompt her by phone twice daily to take them)
• could she bathe herself (no - she has Home Health aides who assist with this)
• could she remember where she was from one day to the next (yes)

The bottom line was that Mam-ma would be a "Tier 2" on the 4-tier Medicaid system, meaning she needs help with bathing and medication.  "Tier 3" patients cannot feed themselves or remember where they are from day to day.  Why are Tiers important?  Medicaid determines the amount paid based on these Tiers.  So at this point, we were looking at a room for which Medicaid would garnish my grandmother's monthly Social Security check (less $61 for 'personal items') and supplement this to meet the facility's requirements - plus $500 per month from us personally.

I explained again that my grandmother had no extra money to pay the $500 per month, and while we could pay that for her ... what did people do who couldn't?  It didn't make sense to think Medicaid would pay for her to move in across the street at the skilled nursing center (nursing home) and be fully covered for services she really doesn't need ... yet she could not get the same coverage at the assisted living facility.

The administrator said there was another option ... Elder Choices.  This is a program that can be funded via Medicaid and allows clients to continue to live in their own home with live-in assistance.  For more information on Elder Choices, view a brochure at http://www.daas.ar.gov/pdf/ecbrochure0707.pdf.  This sounded great until I did further investigating and learned that the patients must be unable to do two of three things:  toilet, transfer, and/or feed themselves.  Mam-ma can still do all three, so she would not qualify ... at least not at this point.  However, this is good information for the future, should things change and she needs help with these things and we are not ready to commit to moving to the nursing home.

Meanwhile, I continued to tell the administrator that it made no sense that there wasn't some option for people with no assets.  Finally she said, "We do have a limited number of full-coverage Medicaid rooms, but I don't know if we have any rooms available at the moment that would qualify."  I asked if I could at least see one, so that I knew all of my options.  The administrator had given me several brochures, pamphlets, and floor plans of three available "suite" options.  She did have an empty room to show me, so we left her office and walked through the facility to look at the space.

The room was 235 square feet.  The administrator said her uncle had a room this size and he had a queen-sized bed, two recliners, and an entertainment center for his television.  It must be wall-to-wall, because this little room didn't seem big enough for all of that.  There was a clothes closet with bi-fold louvered doors, and an in-wall stacked unit of drawers topped by a mini-fridge.  There was a separate bath that was handicapped accessible and had a medicine cabinet and was fairly spacious for a bathroom.

On the "up" side, the facility is truly lovely - very modern and well-decorated, neat and clean, pleasant, and filled with amenities.  All staff members were friendly and cordial and seemed to be very professional.  For the right person who would get out of their room and take advantage of the opportunities to socialize, this might be a good fit.  The administrator did point out that the room she showed me had big windows with bird feeders outside, and she said my grandmother was welcome to have more feeders.  And Mam-ma does love her birds.  There are also two gardens, and Mam-ma is welcome to bring her shovel and other gardening tools to use there.

The administrator explained the menu in the dining area with options plus a "daily special."  She said frequent outings and activities are planned, like a "day to the races" in Hot Springs and a visit to the Clinton Presidential Center in Little Rock.  I don't know that Mam-ma would enjoy either of those, but at least there are options.

So I put my name on the waiting list, and I told the administrator I would talk all of this over with my husband and my grandmother and get back with her the following week.  I came home and showed all of the information to my husband, and we agreed to mull it all over.  He readily said, "We could pay the $500 a month."  This would get my grandmother into a little bit bigger "suite" - a whopping 350 square feet that includes a "sitting area" near the bedroom space in sort of an "L" fashion.  The third option is a 430-square-foot "apartment" with living area/kitchenette, separate bedroom, and separate bath.  This particular unit rents for $3000 per month.  I got the impression that this option would cost us much more than $500 additionally.
 
 I asked if there was a place where Mam-ma could set up her sewing machine, and the administrator said they would be glad to fix a spot in the activities room.  She asked if my grandmother quilts (she does), and she wanted to know if she would be willing to teach others to quilt (she would).  Several ladies who live in condos on the campus are wanting 
to learn to quilt.  I asked about cooking, and the administrator said the activities room had an oven and hot plates, and yes, Mam-ma could bake cornbread and hot rolls there.


I decided to make a list of all of my grandmother's "incidental" expenses:

• the hairdresser
• cokes, cookies, candy, etc.
• medications not covered by Medicare Part D - her anti-anxiety medicine, Tylenol, vitamin B-12 injections, cough syrup, skin creams, etc.
• toiletries, makeup, etc.
• "spending money"
• her tithe to the church
• magazine subscriptions, bird seed, and more

These expenses totalled approximately $300 per month.  Now we were up to $800 per month out-of-pocket, if we opted to select the mid-sized "suite".

We took a couple of days to think about all of this - and to play with Timothy, who came for an overnight visit.  When we were able to sit down and look everything over again, we realized we could not ask my grandmother to go from an 1100-square-foot, 3-bedroom, 1-bath house with nice yard to a 235-square-foot bedroom ... primarily because she is having issues with cooking.  Frankly, the 350-square-foot unit was not that much larger, especially for an additional $500 per month. 

We realized that the three times my grandmother has been admitted to the nursing home for "rehab," she was completely covered by Medicare, so her Social Security income was left untouched.  This is why we had never considered the $300 in incidentals before - she always had money to cover them.  Now we realize that, should she go to either an assisted living facility OR the nursing home, she may very well have expenses that exceed the allotted $61 monthly allowed by Medicaid.  It's a small issue, thankfully ... but one many families need to know about and be prepared to address.  Of course, one option is to expect the resident to "do without" some of those items, but I hope I never have to ask my grandmother - or any family member - to do this.

So we decided to sign my grandmother up for Meals on Wheels and do what we could to curtail her cooking.  We asked my mom to speak to people from church and ask them not to bring garden vegetables, peanuts and corn syrup for peanut brittle, and other things for Mam-ma to cook.  We asked her neighbor, Merrellyn, to call us if Mam-ma came along and asked her to provide any assistance that seemed a little questionable - like a ride to the store or to Ruby's.  We figure that now that Ruby is unable to drive, Mam-ma will start searching for other "drivers" to take her places ... and we know she is not above asking!

We also agreed to check on her more often - to keep a little closer tabs on her activities and try to head off some of her antics.  So I called the Senior Citizens Center and signed Mam-ma up for Meals on Wheels.  The director will have to make a home visit and "interview" her, which is a formality, because she already knows Mam-ma well.  The meals should begin sometime this week, and Mam-ma will get a hot meal each weekday, plus two frozen meals on Friday that she can pop in the microwave over the weekend.  All of this is accomplished for a "donation" of $2 per day ... a BARGAIN!

On Friday, I went to get Mam-ma for her beauty shop appointment, and I went early to talk with her about the meals.  Meanwhile, my mom was phoning the church members, and all of them were 100% on board with what we are doing and in total agreement the time has come for some changes.

Mam-ma told me almost instantly that her digestion was upset, and she was not eating right.  I said, "That's something I want to talk about with you."  I explained that I had signed her up for Meals on Wheels, and they would be starting soon.  She grumbled, and I told her, "You just got through telling me that you are not eating right.  This will be a hot, balanced meal every day - and even a couple for the weekend that you can pop into the microwave."  I continued to explain that several incidents lately had caused us to really become concerned ... the two times I know of she left her stove burners turned on with no flame ... my mother-in-law's sudden failing health ... Ruby's fall and subsequent decline ... and I didn't even mention the episodes of confusion and forgetfulness and her barging into someone else's home. 

I told Mam-ma that I would rather she not use her stove as much.  She glared at me.  "But I love to cook," she said.  "I know you do," I replied, "but I am concerned about you hurting yourself or burning down the kitchen." We went back and forth, and I told her, "I am not saying that you can never use your stove.  Maybe on Tuesdays when your housekeeper is here, you could bake a cake or a pan of cornbread.  Or if you feel you just have to cook something, call me, and if I can make time to come over, I will." 

I knew what was coming next... "What am I going to do with all that food in my 'deep freeze'?"  I told her I had already considered that, and I planned to start having some "family dinners" at our house, and I could use that food in preparing some of the meals.  Then she mentioned cake mixes in the cabinet and other food, and I said, "You can come to my house early and bake a cake for the family dinner.  Don't worry about the extra food - we'll figure it out."

Then I brooched the biggie ... I told her I did not want her to make any more peanut brittle. I explained that I knew she had done it for years and could make the candy in her sleep, but she was just too shaky, even with supervision, to handle that molten candy safely any longer. She sat and stared a hole in me ... completely silent for almost a minute. Then she began to cry. "You just don't understand."

I told her I did understand that this is hard, and she said, "NO!  You DON'T!  I've always cooked and took care of myself.  I've always done what I pleased when I pleased."  And I pointed out ... "and you've had a good run of it for 98 years.  But we are trying to keep you in your own home and out of the nursing home or assisted living."  She replied, "Well, I've thought several times that maybe I should just go to the assisted living." 

So I explained what the options were there - a room about the size of her living room, with very little space for her "stuff."  I pointed out all of the good things, and I told her, "Whenever you are ready, just say the word.  The administrator called me back after I visited, and she says they can have a room for you next week."  But then I went on to tell her that we don't feel that she is ready for such a major change... and if she will cooperate and get the Meals on Wheels and stop using her stove unattended, we feel she can continue to live at home on her own for now.

More silence, and then Mam-ma said, "Well, you just need to come over here and we'll go through that freezer."  I told her I would be glad to do that, and she added ... "and what I can't use, we'll gather up and take back to the grocery stores and get our money back."  I was dumbfounded.  I told her that was not happening ... it didn't work that way.  She said, "Well I know it most certainly does!"  I told her that no, we could not take food back to the grocery store for a refund - they won't do that, and besides, we don't have receipts.  Then she said, "Well, you don't understand... some of it's not fit to eat."  I figure about halfway down in her freezer, things are so old they need to be tossed, so I said, "Yes, and what's gone bad we will toss out." 

Mam-ma shook her head, "No! No! No!  I mean that stuff they bring from the Center is not fit to eat!"  She meant the Meals on Wheels.  I told her that I've not seen a meal come out of the kitchen there that I wouldn't eat, and she retorted, "Y'all don't eat like I do!"  I agreed ... but I added, "There are a lot of things I used to eat that I can't eat now because of my allergies ... and I've learned to adjust.  You're going to have to adjust, too.  I would think if it means being able to continue to stay at home, it would be worth it."

Again, I told Mam-ma to cook when her housekeeper came on Tuesdays.  She said, "I love to put on a pot of brown beans - in fact, I've got a pot on the stove now.  I could cook them in the crock pot, but they don't taste the same."  Now, there are various "camps" on this theory, but I told her to start hers in her old iron pot on the stove when the housekeeper was there, then have the housekeeper transfer them to the crock pot before she left, since beans need to cook all day. 

Then she said, "Well, I'll tell you what, I'm a makin' a pan of cornbread for supper!"  I told her that was fine - make her cornbread.  She had a neighbor coming to visit and eat with her, and I told her, "Make that cornbread while Margueritte is here."  Then she added ... "and I've GOT to make one more batch of peanut brittle for my deacon."  I told her no she didn't, and she said, "Oh, yes, I do - he fixed that kitchen light for me, and I told him that as soon as the weather faired up, I'd make him some peanut brittle."  I explained that her deacon would feel terrible if a batch of peanut brittle in exchange for changing a light bulb put her in the ER or the nursing home. 

So she said, "Well just what are we supposed to do with all those peanuts?"  I explained that they didn't have to be made into peanut brittle and that ... "if nothing else, we'll grind them in the blender and make peanut butter for Timothy!"

We changed the subject ... we had said all we needed to say at that point, and I knew she was very upset.  My stomach was in huge knots, and I felt like a dictator or the Big Bad Wolf!  I called my mom and warned her that she would probably get an earful when she called that evening.  I also refilled the medicine compartments for the past week while I was there and had extra time ... and for some reason, the Monday night medicine was there.  Mam-ma told Mom every single night that she took her medicine, so we don't know what happened, but that is the only dose she has missed in a month.

So Mom said that the evening phone call went well - no mention of our conversation about the Meals on Wheels or the stove.  However, the next morning, when Mom called, Mam-ma was very upset.  She had burned dried peaches in her crock pot.  She said she fell asleep ... and we're thinking she had left them cooking in her crock pot overnight.  At any rate, it was a smelly mess, and she was upset.  That being said, Mom doesn't think she will stop using her stove.  In fact, Friday evening, a man from her church brought her okra!  So there's another church member for Mom to talk with about our plans. 

Mam-ma told Mom yesterday morning that she had decided to get Meals on Wheels, and that I had told her I didn't want her to use her stove any more.  Mom tried to reason with her about how we have to change sometimes, and it's hard, but we have to do it.  She felt she got nowhere.

Yesterday afternoon, I called Mam-ma to check on her and tell her some news, and she never mentioned the peaches.  But after we talked a few minutes, she said, "I've been thinking about it (and she started to cry) ... and whatever y'all want to do with me, I'll go along with it."  I laughed and told her that what we want to do with her is keep her in her own home doing virtually what she has always done ... but with Meals on Wheels and not using her stove unless someone is there with her.  Then she wanted to know about the cost of the meals.  I assured her she could afford them, and I would handle the payment process for her.

I do feel badly for her.  And I know I don't fully understand as well as I think I do.  But I also know that I lost a LOT of sleep this past week over the thought of putting her in a tiny bedroom suite ... the logistics of deciding which of her things to keep ... and getting rid of the rest.  Every time the administrator started talking about the things many of the residents cannot do, Mam-ma could do all of them - and much more.  The bottom line is that she still does pretty darn well for someone about to celebrate a 98th birthday.

I know this could all change tomorrow.  I think the peaches incident scared her a little - at least I hope it did - about her cooking skills and her safety in the kitchen.  My husband and my mom and sister have convinced me I am not evil and did what I had to do to keep Mam-ma safe.  The church members and neighbors have all been very agreeable and cooperative.  And I'm praying Mam-ma gets good delivery people who will brighten her mid-day as they drop off her lunch.  I know that Greg is such a blessing to the people on his route - and he has actually been able to help some who were in distress and needed emergency assistance.  So knowing that someone is dropping in to check on Mam-ma each weekday gives me an added layer of security.

Thursday night, Mam-ma had called me to see if I had my voice back and was coming to drive her to the beauty shop on Friday.  Over and over she said, "I hadn't called you because I didn't think you could talk."  I told her that was right ... I couldn't.  Then she said, "Oh, I have missed you!"  I told her I had missed her, too ... as Mom has been doing all of the calling.  Before we hung up, she told me she loved me. I know she still does, but she surely didn't say such things yesterday!

This is a valuable learning experience for me.  I now know the options for assisted living and for the nursing home ... and I learned about Elder Choices.  I have a clearer understanding of extemporaneous expenses, and I can somewhat prepare for these - for my grandmother or any other loved one who might require residency in one of these facilities. 

I've also started thinking more about my own situation.  I know that tantamount for all of us is a sense of personal control.  And I do know people who have made a conscious decision earlier in life to move into a "retirement village" - or even an assisted living facility - well before the time when that choice might have to be made suddenly or by someone else on their behalf.  Friends of my parents who are in their late 70's/early 80's have recently moved to a patio home in a retirement village, and they are loving it!  The gentleman is a playwright, and he and his wife are producing some of his plays written in the 1940's and 1950's for residents of their own facility and others.  They have lunch in the lodge almost every day, utilize the fitness center, and enjoy the knowledge that more services are available on-site, should they need them some day.

In a couple of weeks, it will be twenty-one years since my grandmother moved into her little house in town ... and it has served her well.  This was a good move for her... although at the time, it was difficult - and honestly, quite devastating.  But it was the right thing to do ... and so is Meals on Wheels, for now.  A few years ago, the only alternative for people like my grandmother was to move into the nursing home.  Thankfully, as our population has aged, programs have been developed that are designed to keep our seniors in their own home longer - and to enable them to afford intermediate steps like an assisted living facility.

One of the purposes of this blog is to provide information and share my experiences, in the hopes that others can learn and gain valuable information and insights for providing the best possible care for their own seniors.  Just as with children, caring for seniors "takes a village," and I for one am glad to know that I'm not alone in this.