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early stages
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esnyder7 posted:
I feel guilty even asking since I know so many people are caring for loved ones that are in more advanced stages. My husband was diagnosed about 3 years ago and is still functioning and driving, but recently lost his "retirement" job because of the Alzheimer's getting worse.
I am trying to place him in a day program but he will be much higher functioning than the others so I'm convincing him he should "volunteer".
I don't know if it will work or not.
I guess I have two questions:
he simply does not have hobbies or really friends because he has always been a person who worked long hours. Now I am his only "entertainment" and he wants my company NON-STOP!!! Meanwhile, I still have a job as well as my adult handicapped son who lives with us. He gets very insecure when I am away from him or lose my patience at all. I am just feeling very stressed and like I need time alone but that is hard to find. Any suggestions from people who have been through this stage - experts keep telling me this is the hardest time partly because he is still functioning so well. He has no idea he isn't perfectly normal.
Secondly, the day program I am hoping he can attend is very expensive - are there any funds available for this type of thing or will I just have to self-pay?
thanks - any good suggestions will be welcome
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cjh1203 responded:
The early stages of Alzheimer's are extremely stressful. Please don't feel the least bit guilty. You're going through a very difficult time and probably feel quite isolated. Caring for your son on top of that makes it so much harder.

Even Alzheimer's patients who did have hobbies often drop them at some point, because they're unable to do them any more. One thing that many people with Alzheimer's seem to enjoy is jigsaw puzzles. I don't know if that would interest your husband, but if you could get him started, it could keep his interest for quite a while.

There may be a lower-cost option for day care for your husband, but I don't really know. I would suggest that you contact both your local Alzheimer's Association and Senior Resource Association (or whatever it's called in your community), tell them your situation, and see what they might suggest.

You absolutely do need to get a break now and then or the constant stress will take a toll on you physically, mentally and emotionally. Is there anyone you could get to stay with your husband for even a few hours a week, while you go out and do something you enjoy? I know he would probably protest, but that's a normal reaction. Usually, once you just present it as something that's going to happen, rather than asking if it's OK, they will accept it better. He will probably even start to look forward to spending time with whoever it is.

Other people may have more ideas for you. My heart goes out to you, and I hope you can find some relief for yourself. Please come back and let us know how you and your husband are doing.

Best wishes,
Carol
 
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esnyder7 replied to cjh1203's response:
Carol, Thank you so much for your response. It is the loneliest feeling -constantly with this person who is not the person that used to be there. The added responsibility of my son just means it's harder to get out and get a break. But I do -knowing how important it is -but my husband gets very insecure and clingy when I do too much so I have to be careful. The responsibility of it all is just tiring but I feel guilty and whiny to say so which is why I'm here telling a stranger. Lol He doesn't like jigsaw puzzles but likes playing solitaire on the computer so does that for hours and hours. That's not a problem -just the neediness and insecurity -needing me with him all the time. And of course the repetition of answering the same questions and responding to things that don't make sense like they do.. ... Ok, thanks for listening -appreciated!!! Beth
 
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davedsel2 responded:
Hello and welcome.

I just wanted to say that I fully empathize with what you are going through. The experiences you list in your posts are very familiar to me.

My father-in-law was diagnosed with dementia about 10 years ago now and my mother-in-law was his care giver. He passed away on February 6, 2013. Mom went through the same things you are going through now.

My own father was diagnosed with Alzheimer's in early 2011. I "took over" his life and moved him into an assisted living facility. His disease had already reached the mid stage and he could no longer live alone (my mother passed away in September 2000). In May 2013 we had to move him to a local VA nursing home as he now needs that level of care. He is doing OK and is getting excellent care from the staff and doctors.

This is a disease that involves the entire family and is hard on everyone. I will be praying for you as you continue to care for you husband.
Please click on my username or avatar picture to read my story.

Blessings,

-Dave
 
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cjh1203 replied to esnyder7's response:
Hi Beth,

My uncle was the same with my aunt. She couldn't even go to the bathroom without him yelling for her. That was one of the big reasons it was such a huge help to her when she started bringing in people to help for a few hours a day. He liked the nurses and aides so much that my aunt could get a break without his getting upset about her not being there, or being in a different room. I know that not everyone can manage that financially but, if you can, even a few hours a week would be helpful.

Were you able to find out any more about adult day care?

Carol
 
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esnyder7 replied to cjh1203's response:
He went to the day program yesterday -it went well. He went back today but I was confused when he got home early and what he told me about the day. Turns out we think he went to a nearby nursing home -he had no idea he was in a different place than he had been the day before. Here's hoping he gets there tomorrow !!!
 
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cjh1203 replied to esnyder7's response:
That's great that he's willing to go!

Is he driving himself?

Carol
 
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esnyder7 replied to davedsel2's response:
Thank you Dave -your response is appreciated. This stage when he "seems fine" to everyone else but really isn't -just feels very very lonely. On top of that, I have a 30 yr old son who is mentally handicapped and autistic, and lives with us. So getting away, or going to support groups etc. is more complicated. I don't mean to whine-it is just a difficult time and feels very lonely. Thanks again -helps to come here and see a reply. Beth
 
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esnyder7 replied to cjh1203's response:
He is driving himself -but yesterday when he went to the wrong place, the people at the program were hesitant to let him still drive himself, but with a little encouragement he made it to the right place today. I'm aware eventually he won't be able to drive, but I honestly don't think we're there yet even if the places he can go alone are limited. But he seems willing to go at least 3 days a week and I'm am beyond thrilled!!!! I'm a school teacher and so am off all summer and I really needed him to have a place to go some days or it was going to be so hard. Thanks so much for your responses -so incredibly helpful. Beth
 
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esnyder7 replied to cjh1203's response:
Now refuses to go - tried everything but no go. I knew it was a 50/50 chance. Because he got lost on the one day, they wouldn't let him drive there. How do I find something else? he needs something to do all day.
 
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jgr4002 replied to esnyder7's response:
You cannot feel guilty! Your husband must be convinced he cannot drive. Get the keys, get rid of his car, if possible. I lucked out my husband did this on his own when he was losing his memory and his ability to explain himself. Two brain hemorrhages followed by frontal dementia. We are both retired, and attached at the hip. Get the book The 36th Hour Day" by Drs Mace & Rabins. It is very helpful. I am not alone and need support constantly and you do also. It is there, we just have to be acceptance of it.
 
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cjh1203 replied to esnyder7's response:
He may be afraid to go because he got lost, even if he didn't say that scared him. Most communities have transportation available for elderly people, at no cost. If you call 211 or get in touch with your local Senior Resource Association or Alzheimer's Association, they might be able to help you find a way to get him to the day care program. Maybe if you can get transportation lined up, you can tell him that it will help keep him healthier if he goes to the program a few days a week, and tell him how much that would mean to you. That approach may work better than asking him if he wants to go back.

I'm afraid I have to agree with jgr4002 that your husband should not be driving. My uncle, too, gave up driving on his own but I don't think it's that easy with most people. Your local Alzheimer's Association chapter should have some good suggestions about how to approach this difficult subject, and there are some resources here someplace that I will try to find for you. You would both feel just horrible if he were to get into an accident and injure someone else, and it is probably pretty terrifying for him to be driving and suddenly not know where he is. My widowed father-in-law's woman friend had that happen to her, and she just stopped her car in the middle of a busy street because she was so panicked, which could have been disastrous.

Dr. Judith London, the Alzheimer's expert who posts here occasionally, has written a book that you might find helpful: Support for Alzheimer's and Dementia Caregivers: The Unsung Heroes.


Carol
 
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cjh1203 replied to esnyder7's response:
Beth, I found this thread from a few years ago. It might have some helpful suggestions for you. Please note that two of the posters actually had Alzheimer's (unfortunately, we haven't heard from either of them for a long time).

Carol
 
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mommaruthie responded:
Dear Beth,
I too am in the same boat as you. My husband was diagnosed 3 years ago and he is still driving. He only drives alone to work about 5 minutes away and to the firehouse. He owned his own company which we have had to transfer his ownership completely to me and the kids. Couldn't take the chance of him making financial decisions anymore. He is very dependent on me. When he was first diagnosed I made the mistake of isolating myself with him for two years until he was finally forced to tell others of his disease. That took a huge weight off my shoulders. I am very thankful for the fire Company as the guys are really good to him and let him still help and go on calls with them. He served as a firefighter for 42 years now and was a chief for 17 of them. He built a business around his love for serving public servants. He was entrepreneur of the year for this region only 5 years ago. He has an unusual form of Alzheimer's, caring two forms of the APO e4/e4 variant. One from each parent. This gave him a 75% chance of getting EOAD. It is really hard as I watch his abilities to wane and his ability to process thought clearly. Sometimes I get so flustered that I too mix up my words and give him confusing instructions out of shear exhaustion I think. My short term memory seems well, but I really do struggle with word searching and saying the wrong thing which really scares me sometimes. I don't know what I will do when I have to take his driver's license away. He has gotten very comfortable with me driving him everywhere else which I am quite thankful for. If it weren't for the firehouse and his Iphone I am not sure what he would do with himself. It is really sad to watch such a brilliant man, slowly slip away. I don't feel up to this caregiver job. I watch my girlfriend, who is 20 years older than me care for her husband of 81 years and I don't know how she does it. The thought overwhelms me at times. I am good with him but it's harder when it's your own husband.
May God bless you as you make these difficult decisions.
What state do you live in, I am desperately looking for another couple to walk through this with. I'm in PA.
Ruth
 
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esnyder7 replied to mommaruthie's response:
Ruth, Where in PA? I'm in northeast Ohio!!and my husband was a firefighter! Unfortunately, he retired and we moved away and he took a job with a private firm investigating fires. So he truly has no guy friends and always worked so much that he has no hobbies or things he likes to do -other than talk to me!!! It is so much harder when it is your spouse -my husband is 72 (I'm only 58), but never looked or acted his age. He still presents a good front -people think he seems just fine-which in a way makes it harder. I know people think I'm exaggerating -but the emotional strain is so exhausting. I know I'm having a hard time getting things done because I'm just emotionally exhausted!! Please write again Ruth-I'm sure we can help each other through this!!!! Beth


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