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The Guilt

June 14th, 2015 at 04:30 am

I've been working hard these past 4 weeks, cleaning out my mother's condo and getting ready to sell it. At the same time, I'm managing her bills, her finances and trying to ensure she's as comfortable as can be.

When I first moved her in there, I was visiting nearly every day, or every other day; gradually, this lessened to just the weekends because, quite frankly, I need all the time I can get to accomplish the above. I'm also still working f/t.

Part of what's driving me to work so hard is fear and guilt. Two unhealthy emotions.

Fear that if I don't get it on the market very soon it has less chance of being sold to families with kids who want to be settled in before back-to-school time. Fear that if it doesn't sell by Labor Day, I'll be stuck paying taxes, common charges and electric all winter and then some, draining my mother's resources. Fear that my mother will still be around when the money runs out, in about 4.5 years from now. Fear that I'll have to put her in a nursing home and she'll be miserable and unhappy.

To be brutally honest, I would rather my mother passed before that happened. People have told me that as the Alzheimer's progresses, she'll be less aware of her surroundings anyway, but I don't know.

And then there's the guilt.

Yes, my mother can hardly finish a single sentence due to memory loss. But she can still express her thoughts pretty well, and what she is saying to me with some regularity is that she doesn't like it where she is. I had a sit-down with some staff there last week and said my mother needed to be more engaged and stimulated, so now, she says, they are trying to get her to "talk about my art" in group settings. But my mother doesn't really want to talk about it, particularly (although she loves compliments and praise of her work), but she wants to create, and that's not something you do in a group setting. (Altho another time, she acknowledged NOT having created any art lately, because, she said, "I don't always feel like it." I wonder if the Alzheimer's is affecting her artistic abilities.)

Everything at this place is done in a group, because of course it's more efficient that way and they probably don't have the resources to do things individually with people.

My mother says she doesn't have any friends there, that they're all "a little crazy" and they all look like they're in their 90s and use walkers and it's all depressing to her. My mother has no physical infirmities and is very spry for her age of 81.

She complains about her lack of privacy. People who come in to clean her room just walk right in, sometimes when she's half-dressed, and they don't knock. This pisses me off. What's worse, my mother told me the cleaning person was "reorganizing her dresser drawers" and even my mother knew they shouldn't be doing that. Maybe the person was nosy and wanted to see what she had, so they pretended to be "organizing" when they need no organizing.

I have already emailed one of the directors over there about this.

My guilt comes from knowing I have plucked my mother from her home and dropped her in this facility, believing it was the right thing to do, but I have exchanged one set of concerns with another set, and there is a void here that needs to be filled.

Living alone, my mother was overwhelmed with the tasks of everyday living, I think. Even though I was managing most of the bills, she still fought very hard to stay on top of her finances and kept asking me for an accounting, and then the questions never stopped because no matter how much I explained, she didn't understand. Issues started popping up when fairly typical repairs or maintenance need to be done around her condo, and I needed to step in more and more to schedule repairs. But even then, when the plumber (or whoever) showed up, she was totally stymied becus it became clear she didn't understand what the plumber was saying. I didn't know if he would recognize her mental challenges and try to rip her off and I could only do so much from a distance, from my workplace where I can't make private phone calls, etc.

In hindsight, I'm pretty sure my mother was also forgetting to take her meds, and that's why she was having the heart palpitations, which the medication was supposed to prevent. I read some warnings on her med that says you have to be weaned off it gradually.

I worried constantly about her still driving her car. Really, really didn't like it.

These are just some of the kinds of things that were happening when my mother lived alone. Whenever I saw or talked to her, she seemed stressed, anxious, lonely, depressed and unhappy. She was always talking about her need to deal with her "paperwork," which, without the bills (which I was paying) really meant the wads of sticky notes she left all around for herself, to capture fleeting thoughts she would soon forget. There were so many sticky notes, she began trying to organize them into little piles, but when I looked at the piles, I saw that none of the sticky notes in any individual pile had any relation to one another, and so if she was ever looking for one of those notes (which she wouldn't becus she wouldn't remember it) she would never find it.

In a way, the paperwork that stressed her so much was her own creation that came from her desire to retain control her life as much as possible at a time when control was becoming harder and harder to hold onto.

So with one fell swoop I moved her to the assisted living place, where she arrived with no paperwork and she is no longer responsible for plumbing repairs, cooking, planning or scheduling much of anything.

Now, she said, it sometimes seems like all she does is go eat a meal and before you know it, it's time for lunch already.

There are all sorts of activities planned, and from what I'm told, she takes part in nearly everything, but my mother has told me after trying these things out, some are "boring," like the hours long shopping trips to local stores where "no one ever buys anything." Or the "corny" cowboy songs some guy was singing to them. Everything's done as a group activity.

The only things my mother said she really likes is whenever a dog is brought to visit (pet therapy), because she is an animal lover, and the exercise classes where they sit around in a circle and have to try to keep several balloons up in the air by batting at them.

My mother likes to go outside but is not allowed to go unless accompanied by a family member (that would be me, my sister has not gone to see her since she was admitted) or a staff person. My mother complained that a staff person was bringing someone else outside and had my mother join them too, but then for some reason they had to bring the other person back in and so they required my mother to return inside the building as well.

I feel bad for my mother becus, Alzheimer's or not, I would react the same way in many of these situations. She talks about returning to live at her condo and driving her car. If she ever learned that her condo is nearly cleaned out, that I have donated many of her belongings to GoodWill, Montessori and Make a Home and that I am about to sell her condo, she would feel utterly betrayed by the person she is closest to. This is what kills me and makes me feel like an awful person who has put their parent in an assisted living facility as much for her own convenience as for her mother's well-being.

It is true, having my mother at the assisted living place gives me a measure of peace of mind that she is being taken care of. But it is an institutional setting very different from my mother living independently. I just couldn't keep up with managing my mother's life from afar, although I live just 20 minutes away. For a short time before I moved my mother, I had set up having a home health aide visit her twice a week for just a few hours at a time. My mother had resisted that for a very long time until I finally just did it. That seemed to work ok although it wasn't without its own challenges. I wanted the aide to take her grocery shopping and to doc appointments so my mother wouldn't have as much of a need to drive herself, but my mother treated her visits as something she needed to "fit in," in between grocery shopping (which she did nearly every day) or visits to the doctor!

I was considering increasing the aide's hours, against my mother's wishes, when my mother's fateful 2 911 calls on Mother's Day and a few days later precipitated a whole chain of events leading to the hospital's refusal to release her to her home where they knew she lived alone.

Although legally they probably couldn't have forced me to place my mom, I didn't fight it because I knew they were right. They said she needed round the clock supervision. Even if she lived with me, I'd have to hire someone to be here. And I have thought about that many times, having her live with me, but I know it would be an untenable situation, even without her having mild Alzheimer's. She's always had the ability to drive me crazy in a very short amount of time. I have often thought of my mother as a high maintenance kind of person who constantly needs tending to. It's just the way she is. She was an only child and in some ways spoiled. So she will point things out to me and then I have to run and "fix" it.

I know what my capabilities and limitations are, and I know that moving my mother in here would be a disaster. Then I would have to move her somewhere else again and it would be another disruption in my mother's life.

As mentioned earlier, I had a sit-down meeting with 3 staff people at the assisted living place. They are making an effort and want us both to be happy, and they are trying, but it is a work in progress and they likely are not accustomed to having a resident artist who is used to lots of solo time and the freedom to do her own thing. Not everyone in this world is an extrovert, and so "talking" about her art is not at all the same thing as actually "creating" her own art.

They have a beautiful arts and crafts room filled with supplies at this place, but my mother has shown no interest in using it because, she has told them, "I have my own arts supplies at home."

My sister's disinclination to help out with things is getting in the way of my doing what's best for my mom. Or rather, I am aware of this and am trying to make sure that doesn't happen. I am still very angry at my sister. When I kept telling her i needed her support and help, she demanded, What do you want me to do? I encouraged her to come by the condo, if only to pick out things she wanted. She started working in my mother's upper studio, and i told her if you can concentrate on this one room, that would be a big help; I'll work on cleaning out the other rooms. Well, my sister did take all the paints, brushes and other art supplies, which I believe she will try to sell. (I told her to keep some for my mom at her new place.)

But i also emphasized that she should try to get everything up all the floor because the new carpeting would be installed by such and such date. Well, my sister came maybe 3 times and she did not finish cleaning out the studio. She pretty much came and went at her convenience and never told me when she was coming. I have been over there every day after work this past week. So yes, I'm very angry at her. Every day I came home from work around 6, fed the cats and made sure Waldo got his meds, changed my clothes and then headed out the door again for the 20-minute drive to mom's. And I wound up cleaning out that studio, along with all the other rooms, myself.

My biggest urge is to not bother interacting with her anymore, to finish up the whole process myself because she's largely useless. Yet I wanted to make sure my sister set aside some of those paints and brushes for my mother before she sold it all. It doesn't make sense to spend precious money on new supplies. So i had to swallow my urge to have nothing to do with my sister in order to send an email asking her again to set these things aside and putting them someplace where I could pick them up.

When I first told my sister I was looking to put my mother into assisted living, the first thing she said is "I think you're jumping the gun." I know those words came from someone who has little to do with my mother, and so has no basis to make that kind of statement, but those words continue to haunt me during periods of self-doubt. Did I do the right thing? Did I jump the gun? Perhaps I could have had my mother live 6 months or a year longer where she was if I'd increased the visits by the home health aide.

There is one other possible option I want to explore. If I can't have my mother live with me, and assuming that most other assisted living places will be similar in price and activities, there is one place I learned of (which has gotten both rave and bad reviews) which is local and which is not dedicated to memory care, like where my mother lives now, but they do appear to have small apartments. I'm not sure my mother would be eligible for such an apartment due to the Alzheimer's, but if she was, it would much more like her old condo where she had several rooms, not just one with a bath, and she would be able to interact with other residents who did not have memory loss issues. These are the 2 key issues for my mom, I think.

I don't know much more about this place than what I saw on their website. I have exchanged phone messages with the director there. No idea how the cost would compare with the $5300/mth I'm paying now, and of course there's the question of when and how quickly the Alzheimer's caused her to deteriorate, would she be able to age in place? I believe this facility has the apartments and a nursing home on site, but no real in-between. Would they force me to move her out of the apartment at some point when she progressed? At the place she's at now, it's all dedicated to memory care people and they have 3 floors segregated by how bad the mental impairment is, so as a patient progresses, they can easily be moved to another level with appropriate care.

Tomorrow is the carpet installation; i have to be on site for that but plan to make some important phone calls, this being one of them, while I'm there.

Yesterday morning right before I left to meet my carpenter at the condo, a woman on Facebook said she wanted to buy some shelves and said she could meet me there at 9. I figured, perfect. I didn't have to bother my friend who lives 40 minutes away to have him drive over to provide "security" when meeting to sell something to someone you met online, since my carpenter would be there. Well, the woman never showed up, so me and carpenter moved out the last 4 bookshelves and loaded them in his truck for GoodWill. We demolished a small, damaged particleboard desk. Once again he said he didn't expect any payment from me, but I gave him what I had in my wallet, which was $29. He's been a greater help to me than my own sister.

I try to make it worth his while even though he's given me a break on payments. This time, he asked to take an old stool and I offered him 2 compact cube-type tables, which he liked. (He lives in a tiny cabin about 500 sf so he can't take big stuff.) Last time I gave him an old (not flat screen) TV, a boombox, VCR, and a very good Sony stereo receiver and CD player. I had no use for it and he's done a lot for me. The CD player wasn't working, though it could be fixable, I don't know.

On today's agenda: Head over to condo this a.m. and concentrate on cleaning the kitchen and baths. Continue emptying lower level studio but since I'm going to visit my mother afterwards, I can only fill up the trunk, not the back seat, so my mother doesn't see it.

I may take her to a beautiful Japanese garden about a 1/2 hour away, or maybe just a more local garden nursery that's interesting to explore. I can give her my camera to take some pix if she likes. That's the plan for today. I hope I'm not too tired to take her out because she really needs it.

9 Responses to “The Guilt”

  1. AnotherReader Says:

    Although this is a difficult and painful situation for you, documenting it here will educate many people about Alzheimer's and the decisions that must be made to care for an aging parent properly. Navigating the system of care is not easy, and your description of the process, including the emotional aspects, will help a lot of other folks that are just starting to think about this or will have to deal with this in the future.

    I wonder if there is a newspaper or magazine that would be interested in publishing a series of first person articles about this subject? Even if they pay peanuts for the content, your story could help thousands of people facing the same issues.

  2. FrugalTexan75 Says:

    You are in a very difficult situation. I look down the road and if my mom is still alive in ten years or so, I wouldn't be surprised if I had similar decisions to make - and the similar non-desire to have her live with me because we'd make each other crazy quickly.

    You can only do you can do. Beating yourself up because you aren't doing "more" won't help. Please make sure you are taking care of yourself too.

  3. snafu Says:

    Having never had to cope with even vaguely similar issues, I can only look at facts available. Your mom was complaining about her paperwork early in 2014 and you already suspected she was suffering from dementia. She 'lost' money, couldn't remember where she left it and was calling for ambulances in fear. By early spring of that year you needed a POA and a system in place to take over paying her bills. If I strip away the emotional issues, I recall your frustration since your mom rejected all ideas of help like a cleaner or medical aide. When the actual diagnosis of dementia was finally confirmed, your mom flat out refused to take the medication that may have helped keep/slow the loss of memory and wanted to continue to drive.

    Forgive my ignorance but I wonder if your mom's reaction to her assisted facility isn't typical for seniors who find change, any change uncomfortable. I suspect patients suffering dementia enjoy being heard and complain more voraciously. Is it possibly to deflect the negatives and 'jolly' her to positive things like meals, craft room, exercise class, your frequent visits...whatever you can think of?

    I hate to sound harsh but the facts don't support the 'jump the gun' theory. I'm glad you sold the car to keep your mom off the highways. The condo needs to be sold to pay the monthly fee of assisted living.

  4. LittleMissSplendid Says:

    Good grief aren't facilities a pain? So many focus on what's easier for them and want to treat every patient the same rather than recognizing that patients are people with individual needs. Truthfully it is unlikely that your mom will be 100% happy in any type of facility because it isn't home. It is possible for her to be 80% happy though and that is what you should aim for.

    I think exploring the possibility of moving your mom to the other place that doesn't just focus on memory care is a good idea. What is most important is her happiness and wellbeing and she sounds miserable in the place she is in. Yes the other place may not let her stay there as she progresses, but if she's there a year, 2, or 3 and happy is that worth it to you? Its clear you care enough about her to say yes.

    Also have you looked into social services available for seniors in your area? Many cities have nonprofits that will send volunteers to act as companions or respite for caregivers/family. This person could definitely sit with your mom outside and provide the supervision the staff is concerned about. They could also engage her individually, do activities she likes, talk or not talk, etc. If your mom has friends, a church community, etc perhaps they can help with some of this as well?

    I had to giggle a bit about you saying you and your mom could not live together because she'd drive you crazy. I have had the same thought about my mom and decided that I'll build one of those mother in law cottages or just divide my home so she has her own wing of sorts lol. Even a duplex would give us enough space, but still allow me to support her.

  5. ThriftoRama Says:

    I want to reach through the screen and hug you right now. I see my future self in these posts, the future self who I know deep down will have to do this for my own mother. Just as my mother did it for her mother, (my grandmother), who had dementia, and just as my grandmother had to do this for her mother (my great grandmother) who had alzheimer's. It's my genetic fate. My children will probably have to take care of me this way once dementia takes my mind away.

    It is so hard, and there's nothing any of us can say to take that pain away from you. But I can say from experience with two generations of this illness, that it is in fact a terminal illness. I don't recall the exact statistic, but once dementia/Alzheimer's sets in, it usually doesn't go on forever. The vast majority die within five or six years, because this is an early part of a more systemic disease whose impacts go beyond the mind. In a few years, everything will begin to shut down, and rapidly. It was true for my grandmother and great grandmother, although it took us a while to piece together the trends and read the research.

  6. SavingBucks Says:

    My FIL had Alzheimer's as well, but was able to be at home with a caregiver for several years before passing away at 91 at home due to pneumonia. A friend of mine was "dumped" (as she put it) into assisted living almost a year ago. She has mild memory issues (not sure if Alzheimer's) especially with meds. She was extremely angry at her children for a long time but is settling into the facility. The tipping point that made it tolerable ----- a BOYFRIEND!!!!! The gentleman across the hall (also "dumped") is a good friend/boyfriend for her and they spend a lot of time together. They have started a prayer group and sing around the piano. They talk about the good old days and about their decreased spouses, etc. He is legally blind, so it is funny when we visit. We are all gorgeous women to him! Smile

  7. freeme journey Says:

  8. freeme journey Says:

    Your dilemma is so real and there is no perfect answer for you or your mom. All I pray for is that you muddle through until you find your way. The best advise I ever got and live with is "when in doubt do nothing".
    Right now your Mom is not comfortable because she dealing with huge change and even if she were in another facility, she would still be uncomfortable and unhappy. Remember her perceptions are altered by the dementia. Even perfect for her is different every day. As hard as it is for you, having the guilt every minute of every day, just know that your Mom is safe and that the carers are trained to look after her.
    As you know, dementia can progress at different rates. For some it may be faster than for others. What will you do if she needs "step-up" care in a few months time and you lose the place where she is currently.
    She is not going to adjust like "normal" people do, her shortterm memory is dysfunctioning and so another change and another move will only make things more traumatic for her. Be patient and pray that there is an "angel" in the facility who will help her settle where she is.
    Strength to you and one day at a time.
    Bronwyn

    PS SNAFU - I wish you would keep your harshness to yourself. You were one of the reasons I stopped blogging. Now please, if you have nothing soft and kind to say, then don't say it.

  9. Joanne Says:

    You are a very loving and caring daughter. You have been so responsible in caring for your Mother. you are doing alot for your Mom. You should be as kind to yourself as you can. I personally think taht you did the right thing. I too would be so worried about your mom driving,and being alone in her house. i dread getting old, though it will happen. You are being kind and caring..

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