Seeking a changed attitude in this strange season of life

storycrafter

A good friend was sharing heartfelt things with me the other day about her healing journey over the years. She spoke of how she and her spouse used to be before they both found recovery in AA and Al-Anon. Before recovery she used to isolate and withdraw from her husband. Now she doesn't do that at all; neither of them do. They do many things together and are very happy in their marriage. It's a wonderful story of healed relationship and I'm so happy for her/them.

The part about isolating and withdrawing really hit me, though, and I need to take a closer look at that. My husband has been dealing with FTD for several years, and is still highly functioning, slow progression, relatively speaking to what most caregivers here are dealing with.  I do my own things in the house and outside the house. I meet with friends, phone meetings and in person, and am fairly busy with various service to others. Almost every day I have something that takes me out and about. I neglect housework because I need down time/rest when I return home.

When I heard my friend talking about unhealthy isolation and withdrawal from her spouse when he was drinking, how she no longer lives that way, it got me thinking about what I'm doing/not doing. Often I'm aware of my isolation in the house. Is it me who is withdrawing too much from my dh? Should I be trying harder and working more at our togetherness?

I grieve the loss of "being together" so much. Years ago his new apathy, loss of empathy, and initiative came into play (characteristics of behavioral FTD) and it eventually became the norm. I let him do his thing without pushing him for continued connection. I was too distracted trying to keep my head above water dealing with the shock of his personality changes and adjusting to taking care of business. Once he was finally diagnosed and we got his meds straightened out, he seemed to gradually get back a little empathy. But the general pattern of isolation/distance between us was set.

Trying to connect meaningfully feels like a tricky balancing act of immense effort. Sometimes when I reach out to him in an effort to have more connection, it backfires and creates even more misery for both of us. However, sometimes it is successful. Who knows which way our encounters will go? It's almost as if I have a form of ptsd and I often avoid trying again. It's certainly easier and less work if I don't try to connect with him. Have I fallen into a negative pattern because it's the easiest thing to do? Do I just need to cultivate more patience? Or is it because it's the most prudent thing to do at this point? Perhaps the effort is no longer worth the emotional price of disappointment and angst?

There's a critical voice in my head saying, try harder, at least make the attempt. And another voice countering it with, it's not worth it; you're swimming upstream against the current and he no longer has the capacity to respond well with any consistency. His world has shrunk and he is content staying home and seems to prefer being alone, even from me.

The other day I spoke to another friend who put out the suggestion I just need an attitude tweak. See the "glass half full" intead of "half empty." I think it's a good idea and I'm working on it. I want to cultivate positive thoughts/feelings to combat depression which lurks over my head, especially with the waning light of the fall/winter season coming upon us.

I can look for the blessings instead of seeing the negatives that are happening. Focus on the positives and what I'm grateful for. I am so grateful for all we can still do. I am so lucky I can leave him at home and go do things to feed my spirit, or to get away a few hours and find refreshment in the outer world. I know it could be so much worse. It's one reason I don't write much any more in the forums because I know I've got it easy compared to so many much further along in the dementia journey.

I believe I need to counter the old inner critic with a positive take, turn around the sad thoughts. I'm going to tell myself more often, it's okay to do your own thing right now; it's important that you do that while you can; you are not a bad wife; you are like a single woman with marital responsibilities, no easy feat to figure out what that looks like; your life is not over. It's a good thing for me to walk away when he behaves badly; it's important to protect myself at times. As I acknowledge and label what is happening to us, I can work towards more loving detachment, and deeper acceptance of what is.

Doing deep grief work and also counting blessings... surely I can do this. We have entered this season of decline and somehow I'm going to learn to do it as gracefully as I possibly can. Some days I will get it. Some days I won't. I am human. Ce la vie...

Thank you for giving me a safe place to explore my thoughts.

Ed1937

Please don't keep from posting because others might have it harder than you. My life was much easier than most for quite some time too. You can still be helpful to others, like you have in the past.

The question "Am I taking the easy way out" had me wondering about that too. I think at some point we all do. Be thankful when you can get out with the girls to enjoy yourself, but do it! Use whatever time you can to take care of yourself. I'm sure you know the time will come when it will be much harder to find time to do anything like that. You need more and better interaction with other people than what you can get at home.

When my wife got to the point where she could not communicate, it was just easier not to try to have a conversation with her, so often times I didn't. Those were the times when I felt we were losing something we always had. But she was not always like that. With her it seemed that when she had a hard time with finding words, it just escalated from there. But later in the day she might be fine. Was I taking the easy way out? Yes. It was just too hard not to. But I forgave myself. You should too.

PookieBlue

Your story sounds a lot like mine. Although I worked as a health care professional for 35 years, I was clueless as to the hardships that caregivers were living with. It has been an eye opener and  heart wrenching to watch someone you love experience such loss. Thanks for sharing.

M1

Thoughtful post SC, thank you.  The difference with your AA friends is obvious, though--their relationship was able to heal because of mutual effort that they both put into it.  Your DH with dementia is not able to do that--through no fault of his own, but that's where the mutuality is lost.  So I agree with Ed, don't beat yourself up.  It is not you who is isolating:  the disease is robbing you both.  All of the effort coming just from your side will not fix this, sadly.

And I also agree with Ed:  you should not feel at all intimidated about posting because of feeling that "others are dealing with worse."  Each of our situations is different, and we really can't compare one to the other--and none of it is easy.  Everyone here has different things to contribute and you never know when. something you might say might help someone else....so please so post, this one was so, so thoughtful and nice to read.

Lgw

Thanks so much for your post. I felt like I am right there with you. I can get out too. I am not worried about him wandering like so many in the dementia world. He is not getting out of his chair except to go to the bathroom or bed. When he doesn't make it to the bathroom I don't focus on being grateful that most of the time he makes it, I get angry that I have a mess to clean up.  I will try to focus on the positive while there is one.

toolbeltexpert

Story Crafter your post is so well written and your able to communicate you story so well. When I read what you said about others having it harder, I have said the same thing,but when I read it my thought was and is, we all have it hard, we compare with others, things that we might not be able to handle on top of what we are already dealing with. We all do it, our point of view of others having it hard. I think you've got your plate full, is it hard maybe not to bad for you, but from where I am standing I couldn't handle what you're going through.

Your critical voice is always gonna try to beat you up,  when you're  looking up towards what is good,even the smallest of things makes a difference. I try to get one thing accomplished on my list a day, even then, I don't always get something done. I'll get it tomorrow I tell myself. I feel overwhelmed by all the changes this disease has wrought upon me and dw.

I had the same issue, everytime I tried to do something it would backfire, I felt like I was walking on glass on the time. But I managed to change and avoid the major pitfalls. But now the new changes are managing mc and visiting.

Well I'll shut up. I am greatful for your post.

Stewart

Dutiful One

Oh, storycrafter, 

I am sitting here in tears. Your post resonates with me so very much. I'm glad you shared you heart; you shared mine, too. I've having the same struggles. 

Thank you. 

storycrafter

Thank you, everyone, for your replies. They are all so helpful to read. I sometimes forget how restoring it is to be heard and understood. Each one of you is so kind and thoughtful to write. Getting your perspective on things and hearing your wisdom gives me important food for thought and is so validating and reassuring.

RickM

“I can work towards more loving detachment, and deeper acceptance of what is.”

Storycrafter, I like that thought…loving detachment, needing to let go of the person who was and care for, if not love, the person that is.

Why is this so difficult?

I am in a situation that is very similar to yours and I struggle with very similar feelings.  Thank you for sharing. 

Marcee

Thank you so much for this post.  My husband was just recently diagnosed with VD but the changes have been happening for much longer.   I do like to get out with my support group of friends as often as I can but often feel guilty about it.   This whole new world is a mystery to me.  I really appreciate what you've shared.

ImMaggieMae

Stotycrafter, there are so many good replies here and I agree with them. Let me just add a couple of thoughts. What we are all faced with, besides having to deal with all the practical issues like helping with ADL’s finding workarounds for things that may put our spouse in danger, is an incredible sadness. It is sadness for the relationship we once had, the person we shared everything with, the person who shared so many memories with, is now slowly disappearing. and will likely someday be gone altogether. I have thought of it another way. We have a dog that I love dearly. I feed him, clean up after him, am responsible for his medical care, etc. This animal has never been able to talk to me or share the depth of thoughts, etc. that a person can. But I love him dearly. He sleeps between our pillows every night.

My DH still has more mental capacity than the dog has. He depends on me to help him with almost everything. He has always been kind to me, even in the early days of the disease when I would scream at him for repeating the same question over and over, or not understanding to lift his foot so I could get his sweatpants on or off. He would act confused, sometimes even trembling. Now that I’ve learned to stay calm and gained an understanding of his limitations, things are peaceful around here. But he has lost the ability to have any more than a short and very simple conversation with me so that is a huge loss. Our dog never could converse with me, so no loss there. But I love our dog dearly and do everything I can to keep him happy and healthy. I am a 24/7 caregiver for my DH. He can’t be left alone anymore. But I still love him fiercely and deeply and will do everything I can to protect him and make him happy or at least content. Often that is just sitting in the room with him while he watches TV.., not wanting to do anything else.

We don’t have children but I can understand the love a mother has for an infant, even though that infant is incapable of very much interaction. It can be argued, of course, that the infant has the potential to be so much more, to have a future relationship with the mother. But for months there is love and the need to protect that infant.

The love and relationship with a spouse with dementia changes drastically. How can it not? It is different, but not nonexistent. The horrible sadness is over what has been lost. And I absolutely struggle with trying to have a positive attitude too, storycrafter. The sadness is crushing. But all the love is still there, maybe even more than before because of the protectiveness that I feel. I can’t imagine this disappearing when he no longer knows or is aware of me. 

Does any of this make sense?

Katie Roo

Marcee, my DH also has VD - recently diagnosed.  I have found this forum to be very helpful as we navigate this process.  My DH is still high functioning and can take care of himself.  He still drives in our small town a little bit.  He has what I call "fits and spurts" when he is not himself and the VD comes out.  I have noticed some slight decline in the past few days.  One of the good things about us (at least right now) is that we can joke about it.  When he can't remember something, one of us will say "your dementia is showing."  Prayers for you and your DH.

Gig Harbor

You are where I was two years ago. I could get out but still had a lot to do when I got home. One positive thing we were able to afford was a house cleaner who came in 4 hours a day every two weeks. Without fail we went for a 4 hour drive and a lunch stop. We didn’t talk much and mostly listened to music but it was companionship at a basic level. By the evening he had forgotten that we went anywhere. Now that he is in memory care I miss those drives.