Alzheimer's Community

I'm very sorry about your husband's Alzheimer's. Getting that diagnosis is so devastating.

I've been on this board for a couple of years, and don't remember anyone ever bringing up this phenomenon of deja vu, so I googled it. Apparently, it can show up in people with Alzheimer's and other dementias, but it sounds like it may not be all that common. Here's an article about it.

When you're talking to an Alzheimer's patient who is saying things that you know aren't true, it's often best to just acknowledge what the person is saying rather than trying to convince him he's wrong (you may already have figured that out). I think that's very hard to do in the beginning, but a person with Alzheimer's can't always process a logical argument, and gets very frustrated at not being believed, or being disagreed with.

Is your husband on any Alzheimer's medications? Do you have support from friends or family members. Your role can be a lonely one, and I hope you're able to count on some of the people in your life to help you with it.

Please keep us posted on how things are going. We'll give you all the support we can.

Carol

Thanks Carol - the article helped - I am a Biology teacher so knowing what is actually happening biologically helps me deal with it.
I do have friends that are supportive but don't live as close to my family as I would like - I'm trying to change that so that I will have more support as things progress. I also have an adult son who has autism and mental retardation and is very low-functioning so my hands are full - and I work full-time still.
This website helps since leaving to go to a group meeting is not easy which makes it not helpful
Yes, I have figured out that there is no point to arguing - his reality is his reality - I get that. Conversations are difficult though - and I live with him and my non-verbal son - that gets lonely when no one in my house actually makes sense!!!!
thanks again for your response.
Beth

Hi Beth-

How stressful to be working full time and have two people to care for at home. Being caregiver to one person is tough enough. I'm sorry you don't have anyone close enough to help you right now. Are you moving to be closer to your family?

How much care does your husband need at this point? Is he still well enough to be left home alone while you're at work?

Are you ever able to take some time for yourself, just to do something you enjoy? There must be moments when everything seems completely overwhelming, so it's important to make yourself do things that give you a little mental and physical break. If you've been taking care of your son his whole life, you probably already know that. Knowing it and actually doing it can be two totally different things, though, I know.

How are you feeling yourself? My heart goes out to you.

Carol

Thanks Carol, 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. Beth

Hi,

You are in such a tight spot - sandwiched inbetween every one else's needs. Take a look at www.alz.com , as well as my book 'Connecting the Dots.." to see how to relate to your husband at this time. Use the comments he makes as a basis for communicating about that subject. For example, 'That girl catches your eye. What do you think of her?'

He keeps repeating himself because that is what is on his mind. Use it as a basis to talk, rather than logically responding to him with 'You already said that.'

Try to get some help now while he may more readily accept it. Say that the help is for you, not him. Local senior centers, churches,etc often have volunteers who will visit, and after a while, you can leave him and go out for a walk or do something nice for yourself. It's really important not to isolate now with so much on your plate - there are telephone buddies, too, who are going through what you are experiencing.

Get all financial affairs in order - arrange for automatic bill payment to take the pressure off you - and arrange for power of attorney both financially and medically. The Alzheimer's Assn. can help you do these things.

Sorry to go on and on but at least know that you are not alone,

Judy

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 Beth

Hi Beth-

It's hard to imagine a lonelier job than caregiving, because it's so emotionally isolating. I hope that you're able to find a job closer to your daughters.

Sometimes I think that the stage of Alzheimer's your husband is in is the hardest of all, when you're dealing with the effects of a disease that your husband doesn't think he has.

I originally came to this board because my uncle had Alzheimer's, and I wanted some advice, so I have never been a caregiver. I did spend a fair amount of time with him and my aunt, though, and got a very tiny taste of what it was like to have to respond over and over to the same statement or question. After the 7th or 8th time, I would be smiling on the outside but screaming on the inside! I can only try to imagine what it's like to deal with that all day every day.

Judy's advice to get some help in now is really important. The more your husband progresses in the disease, the more vehement he'll be about not wanting anyone but you to help him. If he can start getting used to it this early on, and if you tell him that it's to help you rather than him, it will make life SO much easier for both of you down the road. I saw this with my aunt and uncle. My aunt waited until my uncle's disease was fairly advanced and, every time she brought it up, he would just get furious. Because of that, she carried the entire burden of caregiving much longer than she should have, and it took a big toll on her in every way. (She finally had no choice, though, and he ended up loving the people who came to help, and looking forward to their visits.) Even if you only have someone stay at the house for a few hours a week while you go out, it at least gets him used to having someone else around.

It sounds especially important for you to start planning for breaks for yourself when the school year starts again.

As Judy said, the Alzheimer's Association is an excellent resource for everything you'll be going through -- if you look at their site, I think you'll be surprised at all they offer.

I hope you'll continue to let us know how things are going, or just unload if you need to.

Carol

Carol, 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. Beth