A Little Introspection

HangingIn

My therapist has suggested that I might find it helpful to be more open about my DH’s dementia and my own struggles as his caregiver.  She tells me that I need to let go of the feeling that I should carry this weight on my own.  I know I’ll find support here if I can just say what I feel, but I have a long history of glossing over troubling stuff … if I share it at all.

I wonder if much of my difficulty is simply the result of our having been a partnership for nearly all our married life, and now suddenly finding myself in charge.  One would think that this’d be right up my alley, since I’m such a control freak.  *rolling eyes*

We’re approaching the one-year anniversary of the day when I could no longer ignore the changes in my DH, when for the first time I realized he wasn’t always entirely sure who I was.  Those first months were chaotic as we got our legal ducks aligned and adjusted to what has become our new normal.  The “daytime me” is reasonably capable, organized, and calm.  I am still sometimes blindsided by some strange thing he might have said, but most of the time I’m able to treat him as I always have.  The “nighttime me”, when the rest of the household has gone off to bed, is lonely, worried, and depressed.

Who’d’ve thunk our life could have changed so dramatically and so suddenly?

subversivevegan

I'm so sorry you are having such a hard time - and boy, I can really relate. Making all of the decisions is nothing anyone truly wants, yet here we are, making monumental (often life-changing!) decisions without our trusted other half having a say.

I don't offer much except my empathy and the support your will find among the wonderful folks here.

SSHarkey

I can so relate. Married 551/2 years. And I feel him sliding away emotionally. Gets lonely.

M1

Thirty years for us....and yes, it's a huge change.

you're not alone in your struggles. Best thing about this forum, it has kept me sane through some very tough times. We get it and share the same issues, the same losses. I hope it does help you to know that.

trottingalong

34 years here. I sympathize with you and understand what you are going through. I’m very capable of taking care of things but boy it gets lonely. I miss my best friend that I could tell anything to. Now I think before I speak. It’s not easy sharing with others, besides here. I tend to gloss things over or say a little something about whats going on at home, testing the waters. Seeing what kind of response I get. Most often people are uncomfortable and dismiss it as age related or change the subject all together. I’ve always been the cheery one. People don’t care for the one that gets depressed or quiet.

DTSbuddy

Hi Hangingin, Me too. I'm lonely for husband who has disappeared and I;m worried, but not depressed any more. I'm too busy, with trying to meet this challenge. I have made the decision to hire trained help, which My friends and relatives have been saying that I need to. I will look for caregivers to come and be with my husband for a couple hours a couple times a week.

I totally identify with finding the roll reversal problematic. I am starting year four, he has not had an intelligible conversation with me for at least a year, and I still ask his advice! He was so good at keeping us safe and providing for us and planning fun activities. Now His abilities and his rationality waxes and wanes. Tonight he got furious at me for stopping him from putting on a shoe on a bandaged foot. He has a disease that caused huge nasty blisters, and shoes rips them open. I show him photos of what is under the bandage, so he remembers. He was so angry. I wanted to cry so badly, but I didn't . I aked why he wanted to put the shoe on. He said 'go out.' He was desperate to go out for a walk. I stayed friendly but firm and finally talked him into going on a drive with me with no shoe, just the bandage, We drove to the park and watched the moon through the trees, and he said it was FUN. Then we came home and he brushed his teeth and let me re-bandage his foot, and sweetly told me 'thank-you.' and went to sleep.

Six months ago my weeping triggered his sympathy and would stop him from doing damaging or self destructive stuff. But now it doesn't work, as he is losing the empathy center in his brain. Calling on his sense of self does work, appreciating his helpfulness, his kindness, etc.. Sometimes a phone recording of a sibling's voice helps to deescalate. I need help from people who can creatively guide him. Good luck getting sleep. Take care of yourself. I'm sure he would want you to.

Denise1847

I can also relate. It has been a struggle, but I think I have turned the corner and see my new life of being in charge and doing everything as part of my personal growth. You will be surprised at how you will feel accomplished and see that you are stronger than you ever thought. Try journalling and writing down your fears, feelings etc. and then how you handled them as you grown in this new way of stretching your capacity.

I would strongly encourage you to be open with people. Some will not relate because they have never dealt with Alzheimer's and others will be the light you need that day. Our situation is not to be hidden but shared so that others have an opportunity to come along side and support. You cannot get through this without support and being able to speak your truth.

Kat63

Will be celebrating 40 years this year. It’s been quite the journey during this past 9 years. You do need to talk to others about being a caregiver. I have a caregiver group I have been a part of for about 9 months. The first few months it helped just being able to voice what my situation is like. But the last few months I have been more active in bringing information (a lot of info from this site) and actually contributing ideas to help the other members. I’m now meeting with other members outside of our group meeting. It feels good to be able to possibly help others and in turn it helps me.

Anna2022

We will celebrate 20 years in May, 2024.

It has been about 2 1/2 years since I noticed changes, so we are somewhat early on the path. Some days I get the impression that I am the frog in a pot of boiling water, somewhat aware of the changes but mostly fixated on what's in front of me. In truth, many days I am just not able to see the big picture. However, if I compare his behaviors today with those of 3 years ago, I can see the progression. All the tests and all the docs say that there is evidence of accelerated and generalized brain atrophy/cognitive decline but they can't/won't say what it is causing it - no one area of the brain is showing particular damage … but we have ruled out causes other than some form of dementia.

He has no insight into his decline (anosognosia) and so its difficult to manage just about everything. But I do everything now, or arrange for others to help with, make decisions, control the finances, perform chores, prepare meals, see to household maintenance, arrange daily activities and lunch dates with friends for him and me, etc. I am the memory and the decision maker for us both. What a task! The practical effect is that It's impossible to have a decent conversation about anything as DH has little to no short term memory. He is now comfortable saying that he just doesn't remember.

Like you, I am in therapy to help me deal with the changes, the losses, the grief and the anger. Friends, local support groups and family, even the docs, try to help but they are often tone-deaf and offer help that is fairly useless but rarely do they follow through. But I do appreciate the effort and sentiment behind the offers/suggestions.

I'm a bit emotional today… It gets god-awful lonely some days and most nights. And it's exhausting. I try to remind myself that this is a marathon, not a sprint. And I do take care of myself, and developing self-care and structure and support so that I lessen the chance of dying (from the stress) before DH. But in the final brutal analysis, it's just me here alone, doing what needs to be done, trying the next right thing until that doesn't work anymore and then trying another next right thing.

I've learned most of what I know about dementia from this Forum and the participants. It has been a sanity saver. Many thanks to all of you who speak out!

Belle

Over 30 years here and the frog in boiling water concept is so true. I pushed reality away until I couldn't do it any longer and it became painfully obvious that something was very, very wrong. I also am finding it difficult to talk to people about DH and about how I'm coping.

I'd rather avoid people then try to explain and have that information result in people drifting away because our reality is too scary for them to think about. My feeling is that even if I did share more info it wouldn't really make things less worrisome or scary to think about. Maybe I'm just projecting but most people don't seem to want to hear about these situations unless they too are caregivers.

I do see what your therapist is saying though but maybe we are just dealing with anticipatory grief and I'm not sure how sharing about caregiving helps us get through that. Feeling pretty cynical today, DH Is having a bad week, so take what I say with a grain of salt but if you do share and it relieves some of your burden please come back and let us know. I hope you can find some way to relieve some of the pressure on yourself.

annie51

Dear HangingIn, I can relate very much to what you're saying. You slowly lose your partner, your best friend, your lover and the relationship becomes something very different. My DH was the decisive one, I was always the wishy-washy one, so making big decisions is not easy for me. We always made decisions together so I try to "involve" him, but sometimes it's an exercise in futility. I try to at least make him feel like he's part of it. It's a hard road and we can certainly empathize.

mrahope

I, too, understand only too well what it's like not to have a partner anymore, but a "patient". We've been married 45 years and used to talk for hours about all kinds of things, from religion and philosophy to where we should travel next. Little by little I found that I had taken over everything and he just sat in front of the TV or on his computer or phone for most of his waking hours. He used to be my "best friend" and then he became an angry, unpredictable man of whom I'm afraid most days. It's very sad.

CindyBum

Hi Hangingin,

So sorry you have to be here and welcome to all of us who are sorry we have to be here too.

I am like you. I just put my head down and get to work on my own. And, I've been able to mostly do that these last 4 years. Have I been frustrated? Oh yeah. Have I cried more than I ever thought I could. Oh yeah. Am I worried and depressed much of my days. That too. Yet, I could manage all of that for a while, because my DW is still pleasant, not fighting me on things and we can still connect in some ways.

But, now we're approaching Stage 5 if not already in it. I can't leave her alone overnight anymore. I worry while I'm at work that she's home and isolated, though I know she'd just sit there watching tv whether I was home or not. And so I had to buck up and reach out to friends and her family to get some help. Some of these folks have come through so I can go to a conference late in May. I've found a caregiver to come by during a couple days a week.

The relief I feel in reaching out can't really be described any more than I can describe to people what it feels like to watch the love of your life drift away. The help I've gotten is a huge relief — I know she's safe. I get to keep a little bit of my professional life going and can still hang out with my friends now and again. My God…do I ever need that. You need it too! It's ok to go and get that for yourself. You're worth it and it feels vital that we all find ways to hold onto a bit of ourselves because our lives will go on after there's no longer does.

HangingIn

Thank you all so much for your kind words. I haven't dealt with this very long compared to many of you, but it feels like a lifetime. Each of you has expressed something I've felt at one time or another, and you've helped me realize that no matter how alone I feel, alone is one thing I'm not.

RetiredTeacher

https://alzconnected.org/discussion/68991/a-little-introspection

How I can relate to what you are saying. I've always been the strong one, capable, manage it all. I do that every day but nights are so tough. My only alone time and my mind thinks of all the plans we had that will never happen now…I give myself permission to think of a future that is happier, a time when I am free to experience some of the dreams we shared…and I try not to feel guilty that I want a life beyond this dementia reality. Lots of support here. We do know how tough it is and understand the emotions you are going through.