Alzheimer's Community

Hello, Beth. I'm so sorry about your husband's diagnosis. What an upsetting thing for both of you.

I think that your husband's reaction is pretty typical. It may not be worth trying to push the issue with him right now.

You hit on what is probably the worst thing about a spouse having Alzheimer's -- on top of everything else, you can't talk about it to the person you've always shared everything with.

Especially because you are already a caregiver for your son, I really think that joining an Alzheimer's support group could be a tremendous benefit to you. You can find out from people who have traveled the same path you're on what to expect, how to handle the challenges that come up, and what resources are available to give you the help you need.

The most important thing is to be realistic about when you do need help -- you probably already know that from caring for your son. It's too easy to think you should or could take care of everything yourself, and become emotionally and physically overwhelmed.

I hope you'll continue to post here and let us know how things are going.

Carol

Thanks for your reply Carol. Lots of people tell me to get support - it's hard for me on a couple levels. I'm very independent and do think too often I can just handle it myself. The other practical issue is the difficulty of leaving my son, and my husband is getting more "clingy" and doesn't like me going places without him. That's why I thought this site might help - gives me a chance to talk to people without actually having to "go" anywhere
I hope to make a plan to move closer to where my other children live so when things get wrose, I will be closer to my support system, including people who can help with my son as well.
I will continue to post and thanks again for your reply .

Hello Beth (esnyder7)!

I know Carol has already welcomed you and given you some excellent suggestions. I just wanted to add mine to hers.

I can sure understand how you feel independent and want to handle it yourself. If you have a nearby friend or family member who can give you an honest assessment of how they think you're doing, that can be helpful. That way when this trusted person says "You're starting to look tired/overwhelmed to me" it gives you a chance to re-evaluate and make changes. It's really good that you have a plan for "down the road" to move closer to support.

Update us when you get a chance,

Byroney

Thanks Byroney for your response. I think I have a lot of really good friends who will help with that. I am a teacher and have a great group of co-workers. I am president of the board of a non-profit that runs a day program for adults with autism and other disabilities, so that is a great outlet to focus on something else. Truth is, right now what is hard is that I feel guilty even complaining - he's still working and driving and functioning - it's just that our time together is filled with difficult conversations. Not just forgetfulness, but he remembers things that haven't happenend and he is overly sensitive it seems. It is the moment to moment and realizing I'm losing my partner - even though that seems over dramatic since he's still functioning at a sort of "normal" level. The problems are very personal and not very noticeable ot someone else. And that feels lonely.

Please don't feel guilty about expressing your sorrow over the situation with your husband. You know your husband more intimately than anyone, so you're the person who will notice the changes in him and I know it has to feel isolating. You're the one who already can see things that you've loved about him beginning to fade away. That's actually the hardest part about Alzheimer's -- it's not so much the forgetfulness and mood changes, but seeing your loved one's personality begin to disappear. Your feelings are completely justified.

You said that your husband is getting clingy. That became one of the biggest problems for my aunt in the past few years -- she couldn't even go to the bathroom without my uncle yelling for her. When it became apparent that she desperately needed help with him, she refused to get it (until shortly before he died) because she felt that she HAD to be the only one to take care of him, and because he got so upset when the subject was brought up. (He ended up loving the attention of the people who finally were brought in to help.)

It might help you if you could gradually start getting your husband used to having someone else stay with him briefly while you go out, even if it's only a couple of hours a week at first. If you can begin to get him used to that routine, it will make life so much easier for you as he gets less and less able to be alone. I think that is one of the biggest issues for all Alzheimer's caregivers.

As you go through this, your feelings are always valid -- I hope you won't dismiss them or judge yourself for them. Above all, you need to be kind to yourself.

Carol

Thank you so much for your reply - that is exactly the point of this kind of support I guess - to hear your feelings validated and that it is "normal" for what is happening.
One thing I would like to find is someone else in my position - this isn't my parent it's my spouse but I'm 14 years younger than him so I feel sort of like I'm headed into a lifestyle I'm not ready for. I'm not retired and home with him all day - I'm still working and active and know that gradually that will change.
Thanks for your kind response - it helps - really.
Beth

There really aren't that many of us here right now. The only person who was taking care of a spouse recently lost her husband. She still occasionally posts here and might be able to offer some of the support you're looking for. There's nobody in your exact situation. That's why a local Alzheimer's support group might be good -- there are probably more people, and a wider variety of situations.

I can understand why you're apprehensive about the prospect of your life changing so much, and having to give up some of your own time and the things you enjoy. That's one of the reasons I think it would be good to start getting your husband used to having someone else stay with him. The more comfortable he feels with other people, the more of your freedom you'll be able to maintain.

Carol

Thanks Carol - you've been a great comfort already - I know I'll be relying on this as well as other supports as time goes on.
Beth

Hi Beth,

I am very sorry to hear about your husband. Have you thought of going to a local Senior Center? They will have some good ideas to help you. Maybe, they can refer you to a reliable caregiver to help you out.

Ruth

Eventually that may help. He isn't at the point where he needs a caregiver - he just doesn't like to be alone. He doesn't think there's anything wrong with him of course. But he's very clingy lately and only wants to be with me.
thank you so much for your response - I have already found this site helpful.
Beth