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Hello, this is a new year, and I want to make the best of my caregiving. I feel very very tired, and am having difficulty in dealing with my alzheimer patient, whom didn't ask for this disease, but as a paid caregiver, there is no such thing as a perfect situation. This is pretty good, with the exception of dealing with her angry outbursts, which I realize have nothing to do with me. She is only 65 and probably internally pretty angry about her alzheimer's. I know within 6 months' her daughter is going to place her in assisted living, so my feeling is that this has worked for 7 months, 6 more month's and then I move on. I am just very very emotionally tired, and I still show her the love she deserves. Any thoughts on how to cope and keep going as her loving care provider, when unless I initiate conversation there is none. Beyond that, she doesn't understand anything I am saying. I guess what I do well, is that I am there for her, I know her better than I did at the beginning, and I smile a lot.
Advice would be great

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Hi, ALZ is so very difficult and 65 is so very young. I learned that you have to keep dialog very simple. Short sentences. Avoid open ended questions. Instead of 'what would you like to do today', try 'the sun is out. Let's put our coats on. We can get some fresh air. ' Long pauses in between each sentence. ALZ doesn't allow the person to follow complex dialogues. Tell her how pretty she looks, every woman wants to look nice. Try to find some common ground to build on. If she likes to garden, ask her to pay attention to the foliage. If she liked to travel, show her some vacation photos. Also, if you can accomplish a sort of schedule, it might help. You can even make out a calendar to point to so she knows what is next. Morning routine (wash/dress/oral care/etc) Breakfast. Some type of exercise - wa walk, chair exercises, whatever. Hydration, a puzzle, lunch. Fold some laundry, music therapy, etc. Never ask anything that requires memory. Isn't that flower pretty is good. What is the name of that flower, puts the person at a disadvantage and reminds them of their lost memory. It takes some getting used to, but it grows on you after a while. Making sure she is safe is primary and I am sure her family appreciates your efforts.
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I know they do. The daughter is the one living with her, and appreciates me and my experience more than I know. My mother has alzheimer's at 87, so I know about the sentences, it is just that I am with her for 6 hours and it because daunting as to what talk to her about. I tell her she is beautiful all the time. She knows this because she is. I guess I need moral support.
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Bring a fashion magazine with you to work. You can spend quite a long time on a page. 'Look at the shoes in this picture.' What color are they?' It forces the person to reconnect the thinking process. The answer may not be 'right' but it forces the speech. BTW don't correct. If it takes too long, you might say 'I would call that dark gray, do you agree?" Again, looking for speech on easy questions. If you travel or have a family photo of you and your family, you can bring that over and tell a little about yourself. It takes the pressure off her.
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She is 65, and just stares at me. I smile, tell her what a beautiful outfit that she has on, then she goes into bursts of anger. I know this is common with Dementia (frontal Lobe) but it is amazing the anger. I deal with it as patient as I can, but the reality is 40 hours a week, and by the end of the week, we I bet both are exhausted. I love what I do, and she knows I will protect her to no end.
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Music should help. If she is 65, I would start with the Beatles, Rolling Stones, The Who, James Taylor, anything from the 60's and 70's era.
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I take her to listen to music 10 hours a week. That leaves 30 hours. She is very much ridden with anxiety, and wants to know what time it is every minute. I am just thinking, when, and I am only asking this for the daughter whom is asking. When is it time to consider assisted living. Not because we cannot deal with it, but because, she is losing slowly the cognitive ability to remember anything past three minutes. When we sing, she doesn't remember by the time I drive her home. Just wondering. Also, I have a question, back in the old days, what did they call and do with Alzhiemer's and Dementia patients. Did they just say they were insane and put them into insane asylum's. That is really really sad. Thanks for your lovely advice.
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kay - would she benefit by a meds adjustment. Has her doc been told about the anger? There may be something that will relax her a bit. Be sure to do some things to build yourself up in your time off. Is there a caregivers group you could go to to vent and get support and ideas? In any case come back here. There is great support on AC. Good luck to you, sounds like you are doing a wonderful job. (((((((((((hugs))))))))))
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It sounds like you are doing great, kay. Stick around ... I'll bet you can answer some of our questions!

You have an advantage that most full time family caregivers do not ... you go home at the end of a shift! Be good to yourself. Exercise. Rest. Read or watch something stimulating. Laugh with friends. Recharge yourself.

In the "old days" (not so long ago) fewer people lived to the age when dementia usually first appears. In her late nineties my grandmother became "senile." She was never counted in the dementia statistics but looking back that is what she had. She was in a nursing home at that time.

I think the main factor in a decision to place an elder in a care center is what the caregivers can handle. A family caregiver with health issues, no respite, no in-home help, and constant negativity from non-helping relatives may need to place the loved one sooner than a healthy caregiver with plenty of help. Some impairments and behaviors are easier to care for at home than others.

It sounds to me like your client will never be able to function in Assisted Living. She will need more constant monitoring. If she needs placement in the future, I expect it would be into a memory care facility or a skilled nursing home.

My advice would be to keep on keepin' on. Take care of yourself.
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I have found that I have to crawl into the world of someone with dementia/Alzheimer's, not expect the person to be "here" and "now" with me. Not that I'm saying that you expect her to be "here" with you, just that it might take some of the pressure off of you if you go and be with her wherever she is mentally instead of trying to make sense of where she's at in your reality. This has worked for me. For example, for someone with dementia/Alzheimer's who can't complete a sentence I wait a beat to see if they're going to finish and if not I just comment on whatever they said as if it were a complete thought. Short, brief comments. I've noticed that social skills can be close to the last to go. Someone with dementia/Alzheimer's may know that the answer to "How are you today?" is "Fine". Or if the person is increasingly nonverbal they may smile and nod their head instead.

I know it's exhausting but try to go into the Alzheimer's to be with her. Expect nothing. If she's at the point where you are exhausted trying to care for her realize that she doesn't have to have stimulation every hour of those 6 hours you spend with her. Yes, you're her caregiver but the disease prohibits you from relating to her as you might someone else. If you need a short break while you are with her try giving her a deck of cards with no expectations on your part. Just let her do with those cards what she will. Try a coloring book and a big box of crayons. You might want to color and then make sure she has access to crayons and see what she does. My point is that you don't have to entertain her the entire time. It exhausts you and probably exhausts her as well. No need to fill the empty spaces with inane chatter, you can just sit and be with her at times. Hold her hand and just sit. If she's still trying to keep up with her appearance they make fast-drying nailpolish. It dries in like 3 seconds. Polish her nails. And don't feel the need to chat with her the entire time. Long silences make us uncomfortable but I'm not sure someone with Alzheimer's feels the same way. Children's books are full of color, if you don't think it would patronizing to her check out some children's books at the library for her to look at. Many children's books also contain textures, she can run her fingers over some velvet or felt or Velcro.

Whatever you do during your shifts to give yourself a little break without having to leave her alone will not occupy her for long, I'm sure you've experienced that. Which is why you need more than 1 trick up your sleeve. Just let her "be" at times (without leaving her). Alzheimer's is an evil disease that destroys everyone around it. As someone said, you get to go home at the end of your shift so that's a good thing. Do you work for an agency? Can you discuss this with them? I work in home healthcare and my agency has nurses who refuse to work with people with Alzheimer's because it's too challenging. The one case I had where the woman had Alzheimer's I was accused of stealing a picture of Aaron Spelling's home that he husband had printed off the computer. An 8x10 piece of paper with the picture of a mansion on it that I could have printed out myself at home! My agency didn't give this accusation any credibility of course but each time this lady's husband called the agency, wondering where I had placed this picture, I got closer and closer to NEVER working with someone with Alzheimer's again. The agency even called me on my day off! I decided then and there never again. So I feel for you, I really do. 40 hours is a lot of time to spend with someone with Alzheimer's. If it were easy the daughter wouldn't have needed you at all, so everyone knows that it's not easy. "Not easy " doesn't really describe it. But if you're in a position to ask for another assignment and you feel that it's in your best interest to do so don't hesitate. We all have our breaking point and just because you get paid to be with her doesn't mean that it's good for you.
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I am reading Wheat Belly by Dr. William Davis. It's amazing. If any of you are in charge of feeding someone get them off of wheat! All kinds of wheat. We have been fed so many lies about "healthy grains." The book describes how modern wheat causes all kinds of diseases including those that affect the brain. Quite an eye-opener. I am going off of wheat and having fun enjoying other healthy foods. You might be able to really make a difference in overall well being and physical problems. Nothing to lose!!
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Kaydeb, are you aware of the videos by Teepa Snow? She is quite an expert on handling dementia in very gentle ways. Look for her website.
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im gonna eat wheat, whole and processed and i might go nuts but ill be gellin like a felon and the air will be a smellin. i like bread and its " tellin " .
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stay out of my kitchen or ther'll be a flailin..
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Thank you for your comments. One thing that some of you do not know, is that I took care of my mother lived with her full time with Alzheimer for 8 years, so yes, I know what it is like to not be able to go home and relax, and the other side of that now, is this is a respite care site for people that are caregiving, my home condition is not that great, it is not the person, my husband, it is a long story, we are one of the millions that lost everything and almost our house from the 2008 recession. I know this is not the place to mention it, but we think that wells fargo has done some tricky stuff to us. we have emptied out everything, so wa la … life with alzheimer's, go home, life with the stress of going from a medium income to a no or poverty income. Life is stress, it is all around, yes, read a book, go to a free movie, take a walk, but sometimes, you just don't know at the end of the day. It is all so confusing. My husband is 65 I am 54. I have to find a way to get back into the corporate world to make a decent living, which of course is hard, because this is what I love to do. Remember, when people type here, and I do appreciate each and every one of your stories, there are always other sides. I have kept silent in my life, but feel very definitely for whatever reason, that the cards just have never gone my way. I am the most positive person you will meet and of course stuff this a lll down, but I just wanted to remind those that may have never known, I was my mother's main caregiver for 9 years, which is what put us in this financial mess to begin with, to top it off, my father has the money to pay us, for that time, but will not. It is really a long sad story, but thank you all for your advice.
I am blessed that I have what ever it takes to work with alzheimer's patients. But the advice here has been amazing
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In answer to your question, I am self employed, which makes the money go up, but the stress go way up, because when I am not working, I am not getting paid, but I am very good at marketing myself. I like very much what you have stated though "Eyer"? very very positive for me. Sometimes, I think that in this business, changing around to different people can be positive, but I was looking for long term, and boy did I ever get it. It has been 2 years now.
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Wow, kd, your experience prior to taking this job already tired you out. You sound like a very caring caregiver and I would say that you may be able to stick it out for a few more months for the sake of your patient. She seems like she has changed so much that a new person walking in will take a reasonable amount of time to "learn" her and that will probably caused her a lot of grief. You, on the other hand, can see the light at the end of the tunnel (and it's not an oncoming train). But in your situation, it will be important for you to line up another job, and if you get that first, you may have to resign before this dear lady is placed. I do agree with jeanne, something is amiss if the daughter is planning to put her in assisted living. She is already much in need of memory care. Much luck and good wishes to you and please keep us updated on your situation. May 2014 bring you some peace and stability. Many HUGGGGGS!!
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