Hey Bluedaze: Thanks for the welcome. My spouse has had a very slow decline until recently. For ten years his memory has slowly gone so that now very little short term memory. But the last 6 months have been a roller coaster. Recently two episodes of not being able to walk, hallucinating, etc, that docs thought might have been brought on by urinary track infections. Now he's walking again, shakily, refuses to use a walker. During one of these episodes, I got hospice and live in help which we still have, but he doesn't want the aide to do anything for him and keeps asking me every 10 minutes , "when is that person leaving?" He doesn't want to get dressed or shower. He's lost 35 pounds in the last year. He doesn't want anyone to fix food for him and is determined to make his own--cereal or sandwich. He is an man who has never wanted anyone to do anything for him and he can't stand to be dependent. He doesn't count being dependent on me of course. He refuses to have the aide in the room, so we use a video monitor to be able to run to his room if he looks wobbly or confused. And he wants only to be in his bed, except when he walks down the stairs (scary!) to get coffee or food. We have tried bringing meals to him in his room, but have seen him flush them down the toilet. Talk about stubborn!
Singer - as they progress, sleeping a lot is normal for the disease. As you get time, do a search of this site for the discussions. As for taking him off the Namenda, that is always a gamble especially if they have been on it for a long time because you don't know if it has helped. But as you said, his quality of life is not much now.
for the aide, trying getting him to understand you can't do it all. Ask him if he prefers to stay at home and let the aide help or would he rather go to a nursing home? Only you know how much he will comprehend or take it, so figure a way to word it that is not threatening (if possible) yet gets the point across.I know the reason button doesn't work with them, but it is worth a shot.
Welcome to my website. You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them. You did not mention your hb's age, so I'm not sure what category he is in. We have so many Young Onset members here, but also just as many older onset.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
welcome Singer. your AD plight with an unreasonable spouse mimics many of us here. ha. sooner or later he will need more help and hopefully will get used to seeing the aide around. i would let the aide attend to him at all times while they are there. not you. he needs to bond with them. it sounds as though you have it all in place. hope you post often! divvi
Thanks Charlotte, Admin, divvi and deb. Wow, what great support! Irv is 79. He was 69 at diagnosis. I am 69 and was 59 at diagnosis. It has been, is, a long, long, haul. And yes, as Admin pointed out it is different when it is your spouse who is ill. In the last 10 years I have slowly painfully gradually learned to deal with the loss of my husband as I knew him, my best friend, advisor, companion and lover, and tried to develop a life for myself outside of caregiving--developed friendships with single women friends who are available to go to movies, out to dinner, etc; taken up singing and acting in community theater (which has saved my life!). It's helpful to hear that sleeping a lot is a normal part of the progression of the disease. My gut has been to just let him be in peace and not pester him to get up and about and you have confirmed that. Thanks too for the suggestions about the aide. I will try them. Singer
Singer, welcome to our family.....and good for you to keep your "self" going during the caregiving. That is so important but so hard to accomplish sometimes.
My theory was "never wake sleeping babies or Alzheimer patients"!!!
Welcome, Singer, you have come to a good place. You really are having a long haul. It sometimes seems to happen that "slow decliners" can take a sudden plunge. But I agree that letting him sleep is fine. Peaceful for everyone. I'd make the food preparation as easy as possible for him by having things convenient and available. Then let him do it. My DH is stubborn sometimes as well. The Risperidon that has been helping seems to be wearing off. This morning I could not get him out of bed in time to make the day care bus and had to take him in myself. Then when we got there he refused to get out of the car and it took three aides to get him out. He likes day care and came home this afternoon in a very good humor, said it went well. But he's just stubborn. Then tonight he sat in the bathtub for over an hour and would not get out, letting the water get cold (that's OK, it's a warm evening). Then he sat on a chair in the bedroom, refusing to go to bed. I went and played spider solitaire for a while and when I went back to the bedroom he finally let me take him to bed. Luckily we don't have to get up early in the morning. Stubborn, stubborn.
Thanks for your comments. Re "easy" food, I keep sandwich makings in the frig and a lot of cut up fresh fruit. And healthy cereal. So he can make his own and not have to be dependent. I love: "Never wake sleeping babies and alzheimer's patients!" My new mantra. Also loved the bathtub story. Over the last few weeks, my husband has "come back from the dead" again, is walking up and down the stairs many times a day, more alert, carrying on conversations (sort of), alert enough to be back to repeating over and over and asking the same question over and over. He's even taken an interest in reading again, or at least going through the motions. He brings the newspaper up to his room "his cave" he calls it and then brings it back downstairs for me....maybe 10 times over the course of the day. I tell people his better but "eccentric." Doesn't go outside, doesn't get dressed, likes to stay in his robe all day, announces he's going back to bed for a nap after being up for 5 minutes. No short term memory to speak of and no sense of time, I don't believe. When I went away overnight to a wedding he was charming and friendly with the aide who stayed with him. As soon as I got back, he is snarly to the aide, asking me 20 times a day, when he going to leave! Maybe I should go away more often! And I am very lucky, I know, to have that option. Thanks, everyone for listening.....Singer