Sunday, 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  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.


Mark said...

This is a great post. So much information and so much emotion -- a real tear-jerker in some spots. I know that you don't do this to entertain people, but I'm sure many would have trouble conveying all this nearly as well as you do.

I read aloud some parts to my wife, and it broke her heart, too. You're a trooper, and it sounds like although Mam-ma is having an understandably difficult time with all this, the sense of your actions on her behalf are sinking in.

My grandfather finally moved from his home 500 miles away from any family, at age 90. He still was driving (but not safely most of the time) when he took a tiny apartment in a nice assisted living facility, but despite a full kitchen and meager ability to use it, he gladly took all his meals in the dining hall. Like Mam-ma, he was a very social person, and started making friends immediately. Sadly, his health went downhill quickly and he passed away before a full two years were up, but he spent that time living a five-minute drive from one of his daughters and an hour from the other (my mom). I was glad that my son and I got to visit him once there. I miss him, of course, but a part of me is sad I probably never will visit the town where he lived.

Sorry, didn't mean to go on about my own family.

Debbie Robus said...

Mark, thank you so much for your comments. We have felt like Mam-ma could be "the belle of the ball" in assisted living ... if she were younger and more adaptable. She's the least materialistic person in the world, so it's not about her "stuff" - and she has lived in tinier places, I'm sure. But as she put it, "I like to do what I want when I want."

I'm sorry your grandfather's health declined so quickly - and such is often the case. We are concerned that this type of change at Mam-ma's stage in life might truly kill her soul - and she wouldn't last very long, either.

One would think that at age 98, the clock is ticking. However, I saw a woman on Willard Scott's segment of The Today Show last week who was 106. And Mam-ma is basically in GREAT health, so as long as she doesn't have an injury or get some "bug" that takes her down, she could have several more quality years.

The KEY will be keeping her safe and out of trouble!

I love that you shared about your own family. I want this blog to be a "forum" where others share their experiences. We all learn so much from each other - and there are very few "handbooks" for navigating these waters to date. Comment any time!