October 10, 2010

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.

October 03, 2010

What a Week!

What a week it has been!  My husband went to Mam-ma's on Monday and checked on her.  That's when she told him she had baked a cake.  So much for not using the stove!

Tuesday, I was in Mam-ma's neighborhood to visit a friend, and I stopped in at her house late in the afternoon.  She showed me her first lunch from Meals on Wheels - ham, green beans, mixed vegetables, and a dessert.  She declared that it was good, and she was reheating the remainder of the lunch in her microwave for dinner.  I told her I wanted to get some things out of her freezer for our family dinner this next week.

Mam-ma led me to the "deep freeze," and it was far less full than she had indicated, and much of what was there was so badly freezer burned or outdated that it was inedible.  But I sacked up quite a bit - some to try to salvage, and some to toss.  I noticed the cake on a table on her back porch, but I didn't mention it.  I brought home a big package of Spanish peanuts, several packages of pecans, and some vegetables.  I left two bags of peanuts that Mam-ma insisted belonged to her deacon.  He told my mom he got his peanut brittle ingredients, but Mam-ma was positive these peanuts belonged to him.  I told her to be sure and give them to him!

Tuesday night, Mam-ma called me and asked if I wanted her cake. I told her no, and I could tell she was irritated. I asked, "Why would I want your cake?" She answered, "Well aren't you having us over for dinner?" I told her, "Yes ... but not until next Monday!" She said, "Well, it could go in the freezer!" I told her no... she should eat the cake. I didn't want it, but thanks anyway.  She hung up on me.


Wednesday, my sister and her husband went over to Mam-ma's.  She wanted my brother-in-law to re-pot a violet that was root bound, and she wanted my sister to help her sew a quilt top and backing together so that she could make a quilt for Timothy.  My husband stopped in and looked at a light fixture that was broken and changed out her heating and air conditioner filter.  That evening, Mam-ma told both my mom and me on the phone that the quilt was not right, and she had "ripped it all out."  She discussed this at length with my mom and set up a trip to Wal-Mart to look for new quilt backing and some thin quilt batting.  That is in the works for Monday.

My sister doesn't see Mam-ma nearly as often as I do, so she was quite upset about how frail and feeble she seemed.  Mam-ma showed her the freezer, and my sister got a few things, but she told me later how much of what she took had to be tossed at home.  I understood completely.  Oh, and by the way, my sister said the cake was in the freezer! She's betting it comes to our house on Monday for the family dinner, whether I wanted it or not!

I called every evening to make sure Mam-ma took her medicine.  Thursday evening, she was entertaining a friend from church whose husband has recently died.  The lady is supposed to be moving to Texas today to live with her children.  Mam-ma shared dinner with this woman Thursday night - leftovers from her Meals on Wheels for Wednesday and Thursday.  I can only imagine how that was ... or how much was there to eat!  But she insisted they both ate well.  When I called Thursday evening, Mam-ma said, "I want to talk to you tomorrow about several things."  I asked if I should come early.  She replied, "Well it wouldn't hurt."

So Friday, I went early for the hair appointment/errands.  I sat down in a chair and said, "You told me to come early so we could talk about some things - what do you want to talk about?"  She pointed her finger at me, shook it and gave me the "evil eye," and said, "I want a toaster oven to go on my counter like the one Ruby has." I shook my head and said, "No... I'm sorry ... we've had this discussion twice already.  Those are not safe, and you cannot have onel."  She was furious.  "Well Ruby has one and she says they are safe."  I told her that I have one, and the first time I toasted crackers, flames leapt out and up my cabinet!  The big stove is safer than a counter-top toaster oven.

Mam-ma's protest was, "Well, I'm not going to toast crackers!"  I told her that, contrary to what Ruby claimed, these were not designed to bake a pan of cornbread or a cake and the racks will not even support the weight.  She argued with me for several minutes, and finally I said, "So what else did you want to talk about?  I'm done talking about this!"  And I laughed.  She laughed a little, and then said, "Well, if I can't have a toaster oven, there's nothing else to talk about!"

I offered to make her some cornbread.  I told her my mom had offered to bring her cornbread.  She shook her head, "No! No! No!" she said.  She added... "I've got to have cornbread - I need the roughage!"  I suggested she make it on Tuesdays when her housekeeper, Mary, was there.  She said, "Well, a pan of cornbread will last me nearly 2 weeks.  I keep it in the refrigerator."  I told her to make a pan next Tuesday.  She added... "They don't ever send cornbread in them meals."  I told her I was quite sure that I've seen cornbread when I've helped Greg deliver Meals on Wheels.  She backpedaled and  retorted, "Well, they DO send it ... but none that's fit to eat!" 

Then she slumped into her chair and said, "I guess it's eat that stuff from that place (meaning the Meals on Wheels) or forget it!"  I told her, "Pretty much ... unless you want to cook when someone is here."

She also asked if I knew where to get a little electric skillet.  Apparently she doesn't understand that no cooking means NO COOKING!  She has gotten out her electric skillet and set it on her counter top.  She said, "Well, that skillet is so big that when I fry my egg in it, it just runs everywhere."  I mentioned something about how I thought she was going to eat cereal, and she ignored me.  I told her that the purpose of having the meals was so she wouldn't need to cook.  That, too, got an icy stare and no further response.

We ended our discussion and gathered her things to go to the beauty shop.  On the way to the hairdresser's, we talked about how much to pay for the Meals on Wheels, and she asked how much the meals were costing.  I told her two dollars per day.  She looked at me as if she were stunned and said, "TWO DOLLARS per DAY?  You've got to be kidding!"  I told her no... and that was a bargain!  She didn't mention it further.

Then she asked about something on her grocery list, and I looked at the list - orange juice, mayonnaise, eggs, bread, and straws for her milk cartons from the Senior Center.  I asked, "Don't you need some milk?"  "Well, yes, I do need sweet milk," she commented.  Many older folks in the South refer to whole milk as "sweet milk."  She also said she was drinking all of her buttermilk provided with her meals at lunchtime, and I offered to get a quart of buttermilk for her to drink at dinner.  She said that would be good and added, "I need some sweet milk because I'm gonna make a pudding."

I asked, "Are you going to make that pudding Tuesday when Mary is there?"  She whipped around in her seat in the car and screamed, "HONEY!  All I need to make pudding is a bowl!"  I asked, "You're making instant pudding?"  "Well, YES!" she retorted.  I told her, "Mam-ma, I'm so sorry - I didn't know you were making instant pudding."  For the record, I don't know that I have ever bought her an instant pudding mix.  I know I have bought the kind you make on the stove top.  Anyway, I told her again, "I'm sorry - I just didn't realize you made instant pudding," to which she retorted, "No, y'all don't ever come to see me, so you don't know anything about how I operate!" 

I had just had it... I said, "Mam-ma, that is not true.  We have been at your house nearly every day this week."  She retorted, "No, you haven't!" with a little extra emphasis on you!  I told her I was not going to argue, but yes, one of us had been there four out of 5 days.  I pulled into the parking lot at the beauty shop, got out and walked around to open her door and the back door to retrieve her walker.  She said, "I'm just frustrated."  I said, "I'm frustrated, too."  I was also mad!  I added... "We are just doing all we can to keep you living at home in your house as long as possible, and we don't know how else to do it.  Do you want to stay at home?"  "Well, yes," she said.  I didn't say anything else - I knew better.

The ride home was fairly silent, too.  When we got home, the garage door remote opener would not work - dead battery.  Mam-ma didn't have any more - a 12-volt special kind.  I unpacked her groceries, took the dead battery and headed to Fred's, which is not but a few blocks away.  Traffic was horrible.  Fred's didn't carry the 12-volt size.  I was not going to make a trip to Wal-Mart for the battery.  It would have to wait.  I told her to put the battery on the list for her trip to Wal-Mart with Mom on Monday.

Meanwhile, I discovered that my mom was shopping at Wal-Mart, and I asked her to pick up the battery.  I'm not sure why she couldn't find one - the sales people told her there were several kinds of 12-volts, and they needed to see the battery. And I still had it, so Mom would not be able to purchase one, apparently.  I walked right into the store on Saturday morning to the electronics department and got the only 12-volt package on the rack.  Oh, well...

So Friday night, my husband and I went to the high school football game.  We were walking in the door at 10:00 when our phone rang - Mam-ma.  She told he she had been tossing and turning for an hour and wanted to apologize for the things she said to me that afternoon.  I told her to forget it ... that I knew that these changes are hard - for all of us - and it was okay.  She replied, "Well, I don't want you to be hurt over this."  I told her I didn't want her to be hurt, either, but she is, and I can't help it.  I smoothed her feelings as best I could and told her to get to sleep and forget it.

This is how Mam-ma operates.  When she is especially mean or hateful - to me or Ruby particularly - she calls and cries and apologizes later, and basically expects that to solve everything.  And for the most part, it does, because we are not going to stay mad at her for very long.  And I do hate that she is upset and hurting... and basically panicked because things in her world are changing so fast.  But most people understand that the world doesn't operate on the principal of being mean and hateful one hour and apologizing and making it all better the next ... except for my Mam-ma!

So yesterday when I took the battery and installed it, Mam-ma did not mention the day before - or the apology - and she surely didn't apologize any further.  When I phoned last night to make sure she had taken her medicine, she said, "I tell you what ... they brought the awfullest mess of stuff over here and put in my freezer!"  I questioned her - "Who put what in your freezer?"  The friend who is moving to Texas.  She and her son brought all of the things in her freezer they didn't want to my grandmother's and left them!

I asked, "Mam-ma, didn't she know you aren't cooking any more?"  "No."  "But she ate your leftover Meals on Wheels with you, so she knows you're getting them.  Didn't the son know?"  "Probably not," she said, adding... "he said 'whatever you don't want, just toss.'"  I told her that aggravates me at HIM to think he expects HER to handle his junk!  She said it was peas and other vegetables and things, and I have no doubt it is vegetables grown in the garden of the man who recently passed.  So I called my sister and suggested she go over sometime this week and empty the freezer - once again!

I also learned that Mam-ma called a mutual friend this week to "vent" and she asked this dear woman, an LPN, to come over to her house.  The woman cares for her own family members, who are seriously ill, and she told her she would gladly visit on the phone any time, but she could NOT come over there.  Then she mentioned she goes two mornings each week (if her family's health permits) to walk at our new Community Center.  She said she walks at 6:00 a.m. so that she can be home by 7:00 when her family wakes up and needs help and medication.  Mam-ma replied to her, "Oh, I can't get up by 6:00." 

Now, the woman did not invite my grandmother to go to the Community Center and walk, but Mam-ma just automatically assumed that this woman would give her a ride.  The woman told me, "She can't even walk across the parking lot to get to the building ... much less climb the hill to get back to the car afterward!  That will not be happening!"  This was good news to me.  I thought we had already covered the fact that my grandmother exercising at the Community Center is not an option.  Apparently not!

So Mam-ma is still trying to find a ride to the Community Center - and probably to Wal-Mart for a toaster oven!  Someone told me I might have to disconnect her stove, and that has been discussed, but clearly she is already conspiring to cook without it ... via crock pot, electric skillet, and perhaps a toaster oven (until I discover she has one!).

I feel like it truly is only a matter of time until we are revisiting the Assisted Living facility issue.  The administrator was very kind when I called to decline the available room for now.  She said, "I'll just put your file back in my drawer, and if/when you are ready, just call me."  Sadly, that may be sooner than we think.

My friend told me she hopes that I am not beating myself up about this and feeling guilty over these decisions ... "and I know you are."  I told her that truly, I am not.  I have outlined for my grandmother what it will take for her to be able to stay in her home a while longer.  The rest is up to her.  If she cooperates, I think she can stay at least several more months.  If she doesn't shape up soon, it's not going to be long at all.  But it is her decision at this point.  I have done all I can humanly do, so I have no regrets.  It truly is up to her - and God - what happens next.  I feel pretty good about leaving things in His hands.  Hers, however, are another matter altogether.

September 27, 2010

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.

September 26, 2010

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.

September 16, 2010

The "Voice" of Reason

My mother-in-law is gradually improving.  She gave us a good scare while on the heavy medication.  Her thinking grew very fuzzy, and she was wobbly and unsteady on her feet.  Then she just felt "blah" and had no enthusiasm or energy.  The doctor attributed it all to the medicine - particularly the steroid dosepak - and assured us it would clear... and it has/is.  And he told her she could gradually and gently resume her former activities - two words she is not hearing, apparently.  She is presently dog-sitting - for three dogs!  Thankfully two of these dogs are from the same household and get along with the third.  She has not mentioned swimming yet, and as long as the dogs are visiting, she probably won't leave the house.  But the doctor did say she could swim again - just gently and not every day!

My husband Greg spent every night (and most of the days) with his mother for a solid week.  I "spelled" him for a few hours here and there to do things like mow our yard and tend to things on the home front, handle business affairs - and just get away and rest.  Each day, I went to my mother-in-law's house and fixed lunch and dinner and in-between snacks to be eaten with the scheduled medications.  I also did some housekeeping and laundry, and changed the beds. Greg vacuumed his mother's house.  When she began to feel better, my mother-in-law dismissed her son - told him he needed to go home and sleep in his own bed.  So we complied, although Greg returned daily for a little while longer.

One of the first mornings Greg was back at home, he got up early and went to a fast-food place and picked up a breakfast burrito for himself and his mom.  They shared breakfast, and she announced that she thought she would take a shower and dress for the day.  Greg came home, and about noon, he telephoned his mother - and got no answer.  Panicked, he drove to her house, where he discovered all was well with my mother-in-law, but there was a problem with the telephone.  In fact, nearly all of the people on her end of town were without phone service - including my grandmother.

My husband reported the outage, and the phone company recording said it might be two days before service was restored.  Meanwhile, my grandmother's neighbor, Merrellyn, e-mailed my mom and said that she had reported the outage for herself and my grandmother, and she was told the same thing ... but she was hoping they were mistaken and service would be back that Tuesday afternoon.  Sometime around 4:30, my phone rang, and it was my grandmother, calling on her housekeeper's cell phone.  She said, "Debbie, I don't have any phone."   I told her I knew that, and it had been reported.  She said, "Well, Mary came by and I told her, 'Let's call Debbie and tell her my phone is out.'"  I found that funny - like I am the all-powerful telephone repair wizard! 

I realized that this meant my grandmother's "life alert" didn't work, because it's tied to the phone service, but I hoped service would come back quickly.  I told Mam-ma that I knew the phone was out, but there was nothing else to do but wait, since it HAD been reported.

Concerned for both ladies, Greg and I got in the car around 5:30 p.m. and set out to check on each of them.  We ended up at my grandmother's house around 6:00 p.m., and her friend Ruby was visiting.  She lives one street over from my grandmother, and her phone service was out, too!  This didn't seem to faze my mother-in-law, but the other two little ladies were all in a tizzy without their phones!

As we drove home, we passed telephone service trucks in the neighborhood alongside an enormous hole in the ground, and one of the repairman was holding a huge fistful of cables.  Greg said, "That doesn't look good."  Later in the evening, other neighbors in the area reported on Facebook that someone digging a water line cut through 600 phone cables, and it would indeed take days to reconnect them.

But that was not the case for my mother-in-law and grandmother.  Both had service sometime the next morning.  For some reason, my grandmother's next-door neighbor, Merrellyn, was without service a few more days.  We still don't know what happened there.  But she did tell my mother that my grandmother walked over to her house immediately after the phone lines went down to report the outage. Merrellyn said her housekeeper heard my grandmother outside.  It was raining - but just a sprinkle at that time - and Mam-ma was all bundled up.  She was standing on Merrellyn's porch under the eave.  She wanted to tell her know that her phone was out, and Merrellyn said she would report it. Later Mam-ma told me that she had walked to Merrellyn's and told her that the phone wasn't working.

Of course, none of us was thrilled to hear that my grandmother had gotten out in any rain - sprinkle or downpour - and walked on wet, slick streets to a neighbor's to tell her the phone wasn't working!  But what happened the next day was even more bothersome, and Mam-ma has yet to tell me about it herself.

Mam-ma's friend Ruby called to ask her for a recipe for chili.  Mam-ma said she would have to look up the recipe and call her back.  When I telephoned Mam-ma that evening about 5:30, she said, "I'm really worried about Ruby.  She's not answering her phone.  I told her I would call her with that recipe, but she's not answering.  I know what happened ... I bet you anything she went to the grocery store!"  And she said this rather disgustedly - obviously miffed that Ruby would go anywhere without her!  I said, "Maybe she went to get the things to make your chili," and Mam-ma replied, "No... that chili is for church!"  The First Baptist Church has a fall festival sometime in October that includes a chili cook-off.  I didn't know these 90-somethings were participating, but I guess they are!

Anyway, we talked about other things, and I told Mam-ma that Ruby would show up soon.  What I didn't know was that Mam-ma had already been to Merrellyn's house and asked Merrellyn's son, Sean, who was visiting, to drive her over to Ruby's.  Sean knows my grandmother, but he and his mom really didn't understand her request.  Merrellyn told my mom later, "We thought she was bored and just wanting to get out of the house."  They drove to more than one house, and Sean thought Mam-ma was a little confused.  But she directed him to Ruby's house, and I guess he stopped and Mam-ma got out.  From the reports of others, my grandmother barrelled into the house, calling, "Ruby!  Ruby!  Ruby!"  A man was lying on the couch watching TV - his wife was in the bathroom.  This was not Ruby's house!  Mam-ma was off by one house, I think.

The lady came out of her bathroom and told Mam-ma she was in the wrong house.  It turns out, Ruby was at work - caring for another 90-something friend a few streets over.  She had talked to Mam-ma on her lunch hour and told her "I'm going back to work at Gladys'." But I guess Mam-ma forgot or didn't hear or understand what Ruby said, and when she wasn't home, Mam-ma panicked.  She told my mom about it the next day and said, "Oh, I really flubbed up."  But she has not told me about it still... except to say one evening, "I really got upset over that little episode," as if I knew what she meant.  Of course, I do - from other sources.  I am assuming that after she barged into the wrong house, she had Sean drive her home.


On Friday when I picked up my grandmother for the beauty shop, she knew that we had kept our nephew overnight.  In fact, my sister took Timmy to visit Mam-ma on Wednesday.  Mam-ma asked me, "How is Timmy?"  I told her, "Timmy has a bad cough.  We were up for several hours in the night because he had trouble breathing."  She replied, "Well, I've got a terrible cough.  I've about coughed my head off."  That was the last she asked about her great-great-grandson, and she began to cough for me... and I have to say, it sounded fairly contrived.  But she had Tussin DM on her grocery list, and I bought her a bottle.

I ran Mam-ma's errands while she was getting her hair done and quickly deposited her at her house and put her groceries away.  I told her that I had left Timmy with my mom, because Greg was busy taking his mother for a follow-up visit at the doctor, and Timmy's dad was supposed to be coming to get him as soon as I got home.  So I needed to hurry back.  Mam-ma seemed fine with all of that.

By Friday night, I had a sore, scratchy throat.  By Saturday morning, I had a deep cough and felt lousy.  Sunday, my voice was GONE.   I felt better on Monday, but the voice is still not back.  So my mother has been doing double duty phoning morning and night to make sure my grandmother takes her medicine.  On Wednesday, Mam-ma phoned my mom and asked her if she would go to the pharmacy and pick up some medications that the doctor had ordered for her via the Home Health nurse.  The nurse happened by to give my grandmother a vitamin B-12 shot, and I don't know what all transpired, but my grandmother told Mom that the nurse called her doctor and "talked a long time." 

The bottom line was that the doctor prescribed "cough pearls" and an antibiotic dosepak that the pharmacist told Mom "might make her sick at her stomach."  Not good news.  Mom took the meds to my grandmother and insisted she eat some crackers and drink buttermilk before she took them.  Hopefully this will do the trick ... whether she needed it or not ... and prevent a visit to the clinic - or a truly serious illness.

It's been a long time since we went to the family physician for any type of visit, so I am not surprised that all of this transpired.  Mam-ma will sometimes tell me, "My doctor needs to see me ever once in awhile."  My mom has gone with her husband to visit his children and grandchildren in Tennessee, so my husband is going to go with me tomorrow for beauty shop day to serve as my "interpreter," since I still have no voice.

So things are adding up ... and not in a good way.  When you consider the mental confusion, at least two times recently that my grandmother has left a gas stove burner on with no flame, her refusal to stay out of her yard and do such things as rake pine needles, and then barging into someone's home ... it's not good.  While she dismissed me a few weeks ago when I mentioned the assisted living facility again, I think we may have to talk about it more seriously.  I simply feel like the time may have come when she can no longer safely live alone in her own home.

This is National Assisted Living Week.  I heard a staff member from an area assisted living facility say we caregivers should not feel guilty about choosing such a facility for our senior when the time comes.  We are offering them a chance to live as independently as possible while having all of their needs met by a trained, professional staff in a safe environment.  My social worker friend thinks my grandmother would be the "belle of the ball" in assisted living.  It may be time to find out.  I am hoping that my grandmother - and my mother-in-law - will listen to the voices of reason that surround them.  For the moment, my  "voice" of reason is silent.  I may learn that they prefer me this way!

September 05, 2010

Things Can Change in a Heartbeat

I've been reminded this past week just how quickly things can change, particularly when it comes to senior citizens.  One week ago Friday, my mom ran errands for my grandmother and took her to the beauty shop, so that my husband and I could go to an estate auction out of town.  We took my husband's mother along.  My husband was so attentive and hauled our purchases to the car for us, got us cold bottles of water from our cooler and even brought his mother a lawn chair to sit in and rest.

The auction was a BIG one, and it lasted until well after lunch time.  We had our Yukon packed to the rafters with purchases.  My mother-in-law was particularly excited about a box of beautiful china dishes she got that were made in Germany.  She also got  an old foot locker to refurbish.  We enjoyed a late Subway lunch with her afterward before we headed home to unload our purchases.

By Sunday, Greg's mother was complaining of back pain.  She and her friends bought hand weights to use when swimming at our new Community Center pool, and she had used them for the first time on Thursday ... and she said she and her friends exercised pretty vigorously.  Then we stood a lot of the day for the auction on Friday.  On Saturday, she worked in her garage, standing on a concrete floor to sort the things in her boxes.  Somewhere in there, she got her electric lawn mower from underneath the house and mowed some high patches of grass in her yard.  And during all of this activity, she twisted her back badly ... to the point that she was sore on Sunday and in a lot of pain by Monday.  She started taking Aleve ... and lots of it ... but the pain was still fierce.

Her pain progressed each day to the point that by Wednesday morning, she was vomiting and dizzy.  The doctor was called, and he said, "Go to the ER."  My mother-in-law had never been to the ER ... will hardly take an aspirin.  She decided to wait a while and see if she felt better - and I truly think she did for most of the day.  But by the evening, she was worse, so my husband stayed with her for the second night in a row.


By the next morning, the pain was again so bad that my mother-in-law was dizzy and vomiting any time she tried to sit up.  So my husband called an ambulance and transported her to the ER.  The diagnosis was sacroiliitis, which the ER doc described as "excruciatingly painful."  He prescribed bed rest and several medications:  pain pills, muscle relaxers, steroids, and an anti-inflammatory drug.  She is not to stand or sit for long periods of time, nor bend over or lift more than 10 lbs.  The doctor said that once you have this, it's much easier to get it again and/or re-injure yourself.  So my mother-in-law, who is incredibly vibrant and active and belies her 84 years, will have to make some serious lifestyle changes in order to avoid further injury and pain, once this episode is over.

Meanwhile, my grandmother's dear friend and fellow church member - a man she depended on for everything from changing light bulbs to supplying her with fresh produce from his garden (not to mention wonderful friendship) - passed away Friday from cancer.  He had taken his wife and Mam-ma to a local Visitor Center to hear a musical performance last Saturday night ... sat with fellow church members at an after-service fellowship reception on Sunday night.  By Tuesday, he was in a Little Rock hospital, where he died Friday morning.

These two events have given me pause.  How did things change so quickly from one Friday to the next?!  How did a woman who was buying German china and old trunks end up flat on her back and incapacitated a few days later?  How did a man's cancer progress so quickly that he ate with friends one Sunday evening and was dead and buried before the next weeks' morning worship?

The point for those of us who are caregivers is that everything is fluid.  What is going smoothly this minute can be totally screwed the next.  Two winters ago, my grandmother attended a birthday party for a friend one Saturday afternoon, talked with my sister that evening around 7:30, and by 9:30 she was violently ill.  She ended up in the ER with five infections and was not only hospitalized for about 5 days ... she was then sent to the nursing home for more than a month of rehab!

So just because today is a good day doesn't mean everything is rosy or you can get complacent.  You have to stay on top of your game ... and ready for anything.  Just like your small child's fever can spike in a half hour - an elderly person's whole world can change in a matter of minutes.  In order to "keep all the tops spinning," you must be prepared and "bring your A-game."

And one more thing... while we were at the ER, I was once again reminded of the importance of taking an advocate along.  My mother-in-law was given Valium to ease her discomfort and make her more relaxed.  So when the radiology technician came to prep her for a CT-scan, there was no way she could answer the 2-page questionnaire concerning her medical history and health concerns.  Thankfully I was able to do this for her.  AND... since I had gone with her to her last doctor visit, I knew that there had been some question about her renal function ... and a discrepancy in her blood work.  I mentioned this to the tech, and she said, "Ohhh!  We're not going any further with the CT-scan until I see the results of the blood work."  Since the CT-scan required an injection of dye, it was important that the radiology tech be alerted about even a possibility of some problem with the kidneys.

Furthermore, when the diagnosis was made, the doctor began talking about medication and going home, and my husband and I questioned him about his mother's pain.  She had arrived by ambulance, unable to move without being dizzy and/or throwing up.  Six hours later, the doctor wanted to send her home by car and start oral medications that we were to go and collect at our local pharmacy.  My husband asked, "Why can't she have something for pain in the hospital and let it have time to work before we leave?"  My question was, "Why can't an 84-year-old woman who lives alone and is about to be given heavy medication for excruciating pain be admitted to the hospital for a few days?" 

The answer to my husband's question came down to a matter of liability ... if she was medicated and left - and then fell in her garage getting into the house and broke her hip, the hospital didn't want to be held responsible.  Apparently they thought it was better for her to get into a car, ride across town, get out of the car, walk into her house up several steps, and then get to her bedroom and into bed and then take pain medication when we could get it from the pharmacy.  We didn't get this answer all at once in this concise manner ... but rather through a period of hems and haws and hints that led to our ultimate deduction that liability was the concern.

The answer to my question was, "There are certain criteria that have to be met for hospital admission, or Medicare and other insurance won't pay.  If we admit her, we can't guarantee she will meet all the criteria and be totally covered."  This seemed absurd to me... I have no doubt that between the ER doc and the personal physician, some finagling could have been done to assure that my mother-in-law met the criteria ... if she didn't already! And while I appreciated their concern about her money, this was not the issue at the moment!  Again, I felt there was an attempt to cover the hospital and any liability.  And people think we don't need health care reform!

So ultimately, we left the decision up to my mother-in-law, and she opted to get some pain medication in the ER, give it time to kick in, and then go home.  My husband signed a paper saying we relieved the hospital of any liability for the pain pill.  Don't get me wrong ... I do not like hospitals.  I was not necessarily advocating my mother-in-law stay ... but at the same time, her medications would have been monitored, she would have been given food and snacks that fit her dietary restrictions, and trained professionals would have hopefully monitored activities such as getting out of bed to go to the bathroom, showers, and more.  To be so hesitant to admit her seemed ridiculous to me ... but paled in comparison to failing to treat her pain and sending her home in the same shape as she arrived.  And had we not been with her ... or one of her elderly friends or a neighbor had brought her instead of us ... this is exactly what would have happened.

To top it all off, her discharge instructions included being told to that her family physician wanted her to be "in his office in the morning at 8:30." 

My husband decided he would wait until the next morning and see if his mother could even get out of bed before considering whether to make this trip.  The next morning, he telephoned the doctor's office to see if he could determine why the doctor wanted to see his mother, and the nurse said, "That's crazy!  She spent six hours in the ER yesterday - why would we want to see her today?"  Needless to say, the trip to the family physician's office was cancelled.

I cannot say this loudly enough, DO NOT LET YOUR LOVED ONES GO TO THE DOCTOR'S OFFICE OR THE HOSPITAL UNATTENDED.  Virtually everyone needs an advocate to go with them for medical exams and consultations, and you absolutely cannot leave someone alone in the hospital for any length of time.  Don't let the medical staff intimidate you.  Ask questions, and stand your ground.  Don't leave until all of your questions and concerns have been satisfactorily addressed.  If anything sounds strange or doesn't add up, ask about it. 

Be sure you make the medical staff aware of any and all medical conditions or anything else you feel is important and would affect the patient's care and treatment. Do not be intimidated or bullied by health care professionals.  Be polite, but firm.  In my mother-in-law's case, the doctor had given his diagnosis, stated his opinion and plan for treatment, and left the exam room.  We had to ask the nurse to find him and ask him to return, so that we could question him further.  And this is perfectly within our rights... and yours. So often, the patient is in no condition to challenge anything or give information.  Advocates are vital to the health and safety of medical patients ... and the same can be said for those who are in nursing homes and assisted living facilities.

Think of it this way... if we were talking about an infant or a small child, we wouldn't even consider letting him/her go to a doctor or into an emergency room for treatment without an adult in attendance.  We shouldn't allow this to happen to a person of any age, but particularly older adults.  As the advocate, be vigilant and thorough.  Pay attention, ask questions, and stand up for your rights.  Your loved one's well-being - or very life - may depend on how well you represent them.