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 View Thread
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!!!!
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.View Thread
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.
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.
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 !!!View Thread
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!!!
Thank you so much for your reply. I have a good friend who spent the bulk of her career in hospice, and she said the same thing to me about this stage of the disease being the hardest. Everything appears to the world as normal but on a day to day basis and every conversation is incredibly NOT normal. He thinks everything is normal and I feel like I no longer have my husband with me - just this person who looks like him but with whom I can't share most of what is on my mind most of the time. That is lonely. Add to that my son -a joy and sometimes a welcome respite despite the fact that I am also his caregiver-he doesn't talk and compared to my husband who talks all the time but doesn't make sense it is a welcome difference!!!!
I certainly relate to your statement of smiling on outside but screaming on inside -that is 90% of my time !!!!!!!
Thanks again -you gave a wonderful perspective and it is helpful to have someone listen -even a stranger.
Thank you Judy, your response was very helpful. I have said all my life that I have never been lonely a day in my life -but this is a very lonely situation -to not have my partner to talk to while at the same time he's talking to me all the time!
I am interested in help for the POA -I will contact Alz Ass to get help for that -thanks for the suggestion.
I am very careful to never say "you already said that" -in fact I would have to say I think I do a really good job of responding appropriately to him -the problem is it is exhausting!!!! emotionally exhausting.
Thank you for your kind and thoughtful response -it does help
Your compassion is comforting, even if we're strangers.
My husband is still in early stages and still works and drives etc., so yes can be left alone, although he doesn't like it. He is getting more and more attached to me and doesn't like to go anywhere without me nor be home without me.
The hardest part of it really is that to anyone else my
Life still seems very normal, but it isn't . No conversations make sense, planning anything is a nightmare because of his short-term memory -it's just hard. And he of course thinks he's fine, so I have to really walk on eggshells to be patient and answer in a tone of voice that doesn't indicate that I've answered that same question 40 times!
I do have good friends and try to plan nights out for dinner with my friends at least once a a month or so. I'm a teacher so during the summer I get time to myself which is needed. During the school year not having time alone is something I find really affects my mood. I' m in a job that is about meeting other people's needs and then come home to two people that need me -and I'm obviously in charge of everything-shopping, cleaning, bills, wash, home repair, yard work -everything.
I'm a pretty upbeat person so I really am ok, but it's a long road ahead.
I am trying to find a job closer to my daughters but haven't had any luck yet.
Thanks for a listening ear - people really don't understand what it's like on a day-to-day basis.