Caregiver Issues

[wandacleo]

couchie Ativan is an awful drug for a lot of older people. Doctors prescribe it all the time because they want to control demenita and confusion so they don't have to deal with it, but it rarely works and often makes things worse. My Mom's doctor kept insisiting I try different medications but almost everything made Mom more confused, I finally just refused to give her anything except the one Alzheimer drug that seemed to help--Aricept. It's very frustrating. One drug made Mom so confused she ran started to get paranoid.

Claylove, you have taken on a lot. As a person who was a caregiver for years, I can tell you that it can consume your life, so be sure to keep your own life and needs in mind.

[jmh123]

jmh....if you find out the name of whatever it was you were reading, please let me know! The people at Mom's residence home and I are still having 'issues' getting her to take showers. When the staff goes to "tell" her it's time for her shower, she starts cussing and yelling at them, evidently. She told ME that she got pissed because the staff person interrupted her in the main room downstairs while she was having a conversation with someone and then loudly enough for everyone there to hear said, "C'mon Hazel. I'm going to help you with your shower."

I talked with the staff coordinator and told her that the staff should be sensitive to and respectful of the residents' in the way they talk with them and that my mother still has dignity and doesn't appreciate being humiliated. The coordinator apologized for her staff member and we talked in general. Basically, though, Mom usually either refuses or insists that she 'just took one', etc.

It was in the "tips and strategies" leaflet that came with this book: http://www.alzheimersplaybook.com/. The whole book is available as a free download or audio book here: download page. I got a hard copy free from the Alzheimer's Society. The info that was in the leaflet is on the left side of that first page I linked, divided by topic--there's a link to download that on the download page as well, just below the links to English and Spanish copies of the playbook.

I don't know what it is about bathing and Alzheimer's but it isn't just your mom, it's a common issue. I don't for one minute think this issue is resolved for us, but I do think the telling is better than asking tip was helpful. Turning this into a battle of wills won't work--been there, done that. By the time I realized I was on the wrong road with that, and gave up, it was 2 or 3 months before she would bathe again. Then we started over. We have a calendar where she (or we) keeps track of things like baths and visitors, since her memory is not good, so we can check the calendar to show her when she last took a shower. Of course, if she's in the mood to argue, she'll move on to, "I live alone, I don't need to bathe," and so on. According to the "tips," I shouldn't argue back. I should just change the subject, and a few minutes later, tell her again that it's time for her bath.

There were some funny tips like that in the leaflet--when you're taking her somewhere and she refuses to get out of the car, don't argue, drive around the block and try again.

The people at this home should have training in caring for people with Alzheimer's, but even if they do, they won't always have the perfect solution. They won't always be able to get along with her perfectly either. It's a tricky balance for you, because they definitely do need to treat her with respect and give her her dignity, but I'll bet she's capable of testing their patience.

We went through all this with my aunt years ago. Hired someone to come feed her and do some personal care--she threatened the woman, who had cleaned her house for years, with a knife. Then she got kicked out of 2 different retirement homes because of her aggressive and argumentative behavior. Finally we found this place where they knew how to handle her. It isn't easy for anyone.

Claylove, you are doing a good thing. Please just be sure to make a life for yourself and take care of yourself as well.

[Couch Tomato]

Claylove, good luck to you hon and PLEASE PLEASE PLEASE also take care of youself as well. You may think that you are dealing wiht minor issues but you have 3 people you will now "support." Depression is the hardest thing I've ever dealt with when it comes to my mom..even these strokes weren't as difficult. It's the only time I've balled and called my sister and brother for their help. I just couldn't handle it by myself.

Two good days in a row. YAY. My mom may be coming home in the next few days so am happy about that...and she's out of ICU.

[jazzgirl]

Couchie, often the confusion is due to unfamiliar surroundings. Hopefully, when you get your mom home she will be back to normal. Record the inauguration tomorrow for when mom is better. If not, I'm sure various retailers will offer a DVD.

She said she hasn't seen him this happy in a long time. He says "my girl is finally coming home." Somehow that just warms my heart and tells me I am doing the right thing.

Claylove, this was lovely. It reminded me of my situation. Now, both parents are gone, but they were so vulnerable and I was happy to help.

[muskifest]

Hi, y'all! I wanted to pop in when I have something POSITIVE to say for once instead of moaning and groaning "Poor Me!"..

Never mind that my mom lost her brand new prescription glasses a mere one week after getting them....again. I'd even gotten those things to attach so she can keep them around her neck. She said she didn't like those things so took them off. Of course, somebody stole her glasses---she didn't lose them.

Anyway...a couple of nights ago my hubby and I were attentively listening to our younger daughter, Carrie, who's entering high school in the fall. She was all excited about selecting her classes---regular English or XP? (XP) Advanced Algebra II or regular? (advanced) Drama II, which requires an audition or Drama I, which doesn't (Drama II), Biology or Chemistry? (Biology)..etc. It was fun...then my cell phone rang and I just KNEW it was going to be Mom. Yep...and her very sad voice said, "Could you come over here for a few minutes? I've got something I want to tell you."

I knew what it was, but I just said, "Sure"...on the way over there (a very short drive) I felt myself getting all pissed off and resentful and martyr-like..when I parked the car, I just sat there, though. I closed my eyes and 'prepped' myself for going inside. I told myself that my mom was not TRYING to make me angry. She wasn't feeling the things she was feeling as a way to make ME unhappy or guilty or anything. That basically she didn't have any control over her thoughts, lack of them or her feelings. That she was doing the best she could.

When I got inside she was waiting at the front desk. As soon as she saw me she started crying and saying, "I wish I was dead...why am I still living? There's no point. I wish I could just disappear. I hate this place. I hate it. etc."

Truthfully, my first silent reaction was an unexpressed eyeroll and a rant...but what I actually did was just stand there and listen to her. I told her that I'm sure that at times it did seem wrong that she couldn't do things she used to do,e tc., but evidently somebody else with more clout (God) had a different idea about when she should go. She was totally despondent and unwilling (or unable) to even talk about it...Truthfully, all I wanted to do was say something really shitty (that anger thing again)..and go back home to be a parent to my daughter instead of my mother.

But I sucked it up this time, folks, and instead said, "C'mon, Mom...let's go to your room and watch Jeopardy." Now of course I knew we wouldn't do that---she'd never be able to follow it. But we got up there and just talked about this and that (things that I'd already told her every time I visit her)...and then I pulled out a big fat envelope of old pictures and we went through them together. She couldn't identify half the people in them (She didn't even know who my stepfather was!)...but she laughed and DID remember some faces...

Anyway, I was there an hour or so...and when I left, she said, "Thank you. I was just so lonely."

An hour. Sure, I'd already spent time with her just the day before---giving her a shower and washing her hair, etc.....but she'd already forgotten that.

So I'm feeling better about how I handled things this time. Can't guarantee I'll be as good the next time...but anyway....

Hope everyone is finding a way to handle their own challenges...

[Couch Tomato]

Good for you muski.

I guess I should update when things are good -- My mom is doing great -- getting around with no aid of walker - reading again, showing interest, getting out, cleaning, cooking etc etc.

[jmh123]

Good for you muski!

[annabear]

You did good, muski!

Glad to hear MamaTomato is doing so well, Couchie.

[claytonic]

I am always in awe of people who take care of their elderly parents. I know a woman who does it voluntarily for many of the elderly who have no family to care for them. She is just amazing.

Muski, I remember the first time I read what you wrote about your mother, I was stunned at what you endured, but now, I see that she must have been a good mother to you, because when you talk about your DH or DDs, the love just shines through. (I remember what you said about emotionally absent father figures, and how when choosing your husband, you were also choosing a father for your children. Not enough women think that way.)

[jmh123]

How old is your aunt, Scarlett? My mom is not doing well at all, but she doesn't have any diagnosed physical problems other than being just really, really old. It's hard to decide what to do, but she is strongly indicating that she wants me to just stay with her and not call anyone. And especially not her primary caretaker, my brother-in-law, who can lift her. She said she doesn't like it when he lifts her. And she doesn't like him. What to do? It's quite possible that sometime this weekend she's going to collapse on the floor. It happens all the time, just never to me so far because I can't lift her, so they normally don't leave me alone with her when she's like this. It just started coming on the last couple of days. Well yesterday she was good, and mid-afternoon today when I first got here she got up and walked to the bathroom and back with the walker, all on her own. A few hours later, she was nearly helpless. I told her I had no idea how I was going to take care of her and she said she'll take care of me.

She's been listening to Barack Obama and other politicians giving speeches on TV since then. I like that better than when she's channel surfing for anyone who talks a lot with a loud voice. I turn the monitor down, but still. Nancy Grace? Old disaster movies? Movies about scary bad people? Anything that's loud. She was very calm for Obama. Or I was. I guess a good politician is the ultimate voice of assurance. Now she's in bed with talk radio. She just likes loud voices.

later ... so I just talked to my sister and brother-in-law and they said just leave her alone and let her do it herself. She can do it. It just takes her a long time. A really long time. OK. And that she's more likely to fall with me helping her than not. OK. And that physically she really is capable; it's all cognitive. Stay tuned.

even later ... so this time I let her do it herself, and asked how I could help, and she kept getting the wheelchair and trying to use it like a walker, from the front, facing the seat. She wouldn't turn around and try to sit in it. So after the second or third time, I just got the walker and handed it to her and she got up and went to the bathroom. And back. (Although I did have to supervise the gown up diaper down portion and ooops too bad about that nightgown that didn't make it out of the way earlier today.)

[Couch Tomato]

My mom seems fine most of the time but when she is coming in and out of sleep she seems to confuse dreams with real life. It's so odd to hear her tell me these things that happened but I know none of it's real. She has an appt with her regular doctor and a neurologist soon and I will bring this up and explain and hope I get some answers. Or maybe it was a product of the brain bleed or the medication she's taking.

[jmh123]

My mom does that too couchie. Has for years and years. For the last months she occasionally will wake up almost feral, but usually she's just totally disoriented. The fun part is that it's just as likely that she will wake up better as worse. And there's a lot of sleeping going on throughout the day and night, so hour to hour, you never know who or what you'll get next time she wakes up.

My mom's brain is a mess, I'm sure. I think the "cause" for her is similar to your mom, couchie, a lot of mini-strokes or minor strokes or whathaveyou. At least your mom is getting treatment--that can really make a difference in terms of limiting the damage. But dang, my mom is one durable human being. She's a survivor. Yours seems to be too.

[Scarlett]

jmh, my aunt is 95. Until early last year she did most things on her own and just had people to assist her with a few tasks, like when she was puttering around in the garden. They didn't need to be around all the time.

Just mho -- when people get older, I think it is more important for them to be around those whom they like and trust more than anything else. As long as a responsible person is with her who can call for help, the physical lifting part isn't as important. Neither you nor your bil can prevent falls. Hopefully it doesn't happen, but if she falls and you're around, you can call for help and sit with her and soothe her until help arrives. Unless she is pinned down in a life-threatening position I don't know that she would have been better off if your bil had been there instead. He may be able to lift her but if he's not in the same room, it could take him several minutes to discover her laying there, perhaps the same amount of time for you to dial and receive emergency help. With some types of falls, it may be even better not to lift her until professional help arrives.

couchie, my aunt sleeps deeply for long stretches of time and also takes a while to get oriented when she wakes up. I don't know that it is something to get worried about. Right now, we're just very happy that she wakes up because we were so scared when she was in a coma.

I think just the fact that they're still with us each day is a cause for celebration! {{{jmh and couchie}}}

[jmh123]

Mom's back to "normal" since last night--she can get to the bathroom using the walker no problem.

I hear you Scarlett about the liking and trusting. I wish....back to southern Gothic on that one. Well, I'm working on it. In the meantime, today she's so grouchy she doesn't like anyone.

[luckiest1]

{{{jmh, couchie, Scarlett, anyone else dealing with caregiver issues}}}

I am so glad my Mom is so far so good after her cancer surgeries a couple of years ago. I know there'll come a day when she needs care but so far it's working out really well having my daughter live in the basement, for both of them. It gives Lindsay a place to stay in Toronto which is generally very expensive for a student to find accomodation, and it gives me peace of mind to know that my mom isn't alone for long stretches of time. When the time comes I figure either I'll have to move her to the town I live in, or move to Toronto myself. I don't know how I'd deal with caring for her from 2+ hours away. And my only brother lives in Taiwan, so he'll be no help.

[Couch Tomato]

Mom is home one day and I had to call 911 for her. I can't put it off any longer. I have to figure out who will be here to take care of her during the day.

[FearofH2O]

Couchie, so sorry she has to keep going through this. Is she too young for one of those senior day care centers? We a so have the Shephards Center, which is a nonprofit center for seniors to play cards, take classes or just watch tv with others. I think the socialization factor helps keep them more alert.

[jmh123]

{{{Couchie}}}

[muskifest]

My mom had two falls last Friday, the second one took her to the hospital. In fact, I got the call on my way home from the airport after having flown back to the west coast from my week-long conference--I didn't even make it home but went straight to the hospital, instead. They admitted her with lots of nasty bruises and cuts from the fall and she stayed four days. Her confusion is worse---she doesn't even remember falling---and now her speech is slurred a bit. While she was in the hospital I arranged to have her leave her nice room at the assisted living and move into a nursing home. I canceled her HMO insurance and now she is on Medicare/Medi-Cal, which means my husband and I will no longer have to pay $3,000 a month out of our pockets (and which, over the last three years has depleted any and all money earmarked for our daughters' college and our own retirement) and she will live her days or years out in the nursing home. I am sick about it.

That paragraph catches you up to yesterday. Late last night after actually moving mom from the hospital to the nursing home, I wrote the following to a close friend. I haven't been around here lately, but many of you have been supportive throughout this angst of mine, so I'm bringing my post from last night here. I'm kind of a mess right now.

I took Mom to the nursing home today and it was as horrible as I imagined it could be. Long story short is that although she is so very confused and the Alzheimers is advanced, she still is aware of her surroundings and knows that this place is not 'home'. She lost it twice--got very agitated and verbally cruel. She said to me more than once, "You tricked me. I never thought you'd do this to me. You and I are through. I never want to see you again." etc.

She yelled. She cried. She begged for me to take her "home". She threw her cane---one time she even threw her glasses. We'd talk her down and she'd be calm for a few minutes, but then she'd get up and try to get dressed and say that she was going to walk home since I wouldn't take her.

It was hell.

When they called the doctor, he automatically told them to giver her Ativan, but that is the drug that unfortunately causes what they call the "paradoxical effect" on my mom. It's supposed to calm and decrease agitation, but it makes Mom totally lose it. Totally. She gets almost uncontrollable. So the substitute drug wasn't in the nursing home and they had to order it. Unfortunately, the damned drug STILL hadn't gotten there by the time I finally was able to 'sneak' out and come home.

Meanwhile, she was still trying to get up and walk out. Earlier at dinner she said to me, "Amy, we've GOT to go pick her up." When I asked who, she said, "My child! She's probably going crazy waiting for us." I said that I am her child and her only one. She said, "I don't have another child? I'm sorry. Forgive me."

This day has been so very painful. I KNOW she doesn't mean it when she says those awful things, but it IS how she's feeling at the moment she's saying them---even if she doesn't know what she's saying, you know? And I'm soo tired and she was begging me to sleep with her in that little twin bed. When I said there was no room, she said she'd sit in the chair and I could sleep in the bed. We finally called an agency to hire a "sitter" who will sit there at her bed all night. But even after she got there, I couldn't leave for another two hours. And the damned medicine STILL hadn't arrived.

I'm convinced that she suffered a tiny stroke during this fall, although the hospital never even did a CT scan and the doctors didn't think she had a stroke. I told them that her slurred speech was NOT usual, but they didn't seem concerned. I'm not sure it matters, either, actually. Her delusions and other signs of dementia were already increasing, so...

I'm supposed to go back to the office tomorrow, but I don't think I can. I feel hollow yet filled with such grief and heartache I can hardly stand it. Intellectually, I know I'm doing the only thing I can do, but that doesn't help right now....And I know that in time Mom will calm down and/or adapt to her new situation...but right now having faith in that doesn't help, either.

God save me from this kind of old age....and God save my children from what I'm living right now.

[jmh123]

{{{Muski}}}

I so understand. I'll try to write more later, but I want to say right away what people have said to me (waves at lilyshine)--your mother will be unhappy wherever she is. As my brother once said, my mom could be in the Taj Mahal being cared for by Mother Theresa herself and she would still be unhappy. And as my friend Richard said, you've got to put your own needs first. And try not to feel guilty about it. You've done so much for your mother, muski, and I can tell you from my own experience, no matter how much you do, it will never be enough. Nothing can make things good for her--nothing. This is a terrible, terrible, heartbreaking disease.

[ldyjocelyn]

I'll just add a "what she said" to what jmh wrote.

{{{{{{{{muski and family}}}}}}

[Couch Tomato]

Muski -- hugs to you hon. I know what this is doing to you. I hope we can see each other this week. I'm free the rest of the week..maybe Friday. I'll call you tonight.

[FearofH2O]

muski, you can't do any more than you have been doing. Your mother is safer there where she will be watched so that she doesn't injure herself. And your family needs you too so you need to take care of yourself.

My dad had parkinsons with demetia, at one of the last visits I had with him before he died, he looked at me and told my mom,"when is that lady going home?" It made me sad but it was the disease talking not my father.

[muskifest]

Thank you for all the support.

Today I'm beginning the next phase of my life. It's one in which my children, my husband and myself are the reasons for being. I will continue to love my mother and I will visit her whenever it feels right and there's honestly time to do so, but I will not visit her because I feel I 'should' anymore.

Yesterday, I took our visiting dog for a walk. (Oh, did I forget to tell you that at the same time I was losing my mind dealing with my mom losing hers Tuesday evening, Kenny went to pick up the nice Rottweiler that we'd committed to take care of for a week? Nice timing, huh? :bigemo_harabe_net-24: )...and while walking with the dog and listening to Clay (for the first time in a VERY long time) and actually moving at a pace that had me huffing a little, I suddenly felt different. And I realized that I felt similar to the time back in 1992 when, after about five weeks, antidepressants 'kicked in'. It's a feeling that is as if a thick, wet, heavy woolen cloak has been lifted off of me. It's not a 'panacea' feeling---that all is well and all will be well and butterflies and all that. It's a clarity, a sense that..."Okay, I can deal with this. I know what I need to do. I'm okay."

And I found myself happy at the thought that now I can really get excited with Alex about her upcoming big step---off to college. And knowing that now we will have $3,000 a month MORE resources almost made me sink to my knees with relief. (We've been paying that much every month out of our own salaries in order to keep Mom in the assisted living residence. In the nursing home she is now on Medicare/Medi-Cal and we don't have to pay anymore.) Then I thought about Carrie and how I WANT to spend more time with her. She's 14 and entering high school and I want to become even closer to her and stay involved with her life in these important years coming up. And Kenny. God. He and I have been 'best friends' for these past years, and we've done a wonderful job partnering to keep the household and family functioning. But we haven't truly been "close" in so long. I want to work on making our relationship stronger and closer.

So. I took some more of Mom's things to her yesterday afternoon---her own bedspread that I know she loves, more clothes, a large framed picture of her grandmother that she's had forever and a plate that was made from a very old picture of my grandparents on their wedding day. Then I put many, many photos in a basket and took them, too. I didn't know what to expect when I got to the nursing home, but she was much better than when I'd left her Tuesday night. They'd administered the medication and she wasn't aggressive (much...heh)...

Crap...I just got a call from the nursing home. Mom wanted to talk to me. She got on the phone and basically did a repeat of Tuesday night, telling me that she has to leave, that she can't stand it there, that she wants to die, etc.

It's not over, but I'm slowly restructuring my own frame of mind so that Mom and her disease is NOT the driving force of my life anymore. She is my mother and I will always love her, but I KNOW that if she had all of her abilities she would not want me to shortchange my children, my marriage or myself because of her needs or demands. I know that. I can only do what I can do and I am promising myself that from now on I will remember that what I am doing is....enough.

Thank you all for being here and reading....I have no delusions that everything will be fine. But I'm determined not to dwell on all the reasons it can't be.

And since I'd REALLY love to be planning a Clay Aiken Concert trip....

[jmh123]