How to get right in my head...

RetiredTeacher · May 16

I struggle with my own emotions dealing with this. I am luckier than many. We are not as far down the road as some. DH can still do all his ADLS but is so emotionally needy. He is safe at home by himself but prefers I sit with him 24/7 and watch reruns of the same TV show we've watched so many times before. I know many of you can relate. I'm not ok with that anymore. I have a strong self preservation instinct and fiercely independent but I really struggle with balancing my needs with the limited time I have left with him. Yes, this could take many more yrs, VD, but he will never be healthier than he is now. I need to assert myself so I can make sure my needs are met. He won't be happy wirh any changes but I'm not happy sitting watching reruns all day. I miss my life. I want it back. I am younger than he is and have so much life left to live. I struggle setting boundaries that allow me the time I need because I know he will be unhappy. After all these years I'm not ok not living a full life. I am starting counseling to help me understand why I struggle with this. Just wondering if any spouses feel like they are not able to live life on their terms. I'm not a selfish person. I've always taken care of others first but can't shake the strong feeling to take care of my needs now. I can't change him, the disease or the final outcome but I need to survive. I need to stand up for myself and realize my needs are just as important as his. It just feels like I'm leaving him behind if I'm moving forward... Can anyone relate?

Carl46 · May 16

I can relate. My wife recently went to MC because I couldn't care properly for her anymore, and I am discovering things I want to do that hadn't even entered my mind for years. At age 78, I have finally retired (I retired from my paying job at 72 to care for her).

Now, I can go for a walk, take an art class, learn Tai Chi . . .

We don't practice suttee in this country. You are not expected to throw yourself on your husband's funeral pyre. Neither are you required to bury yourself with him before his death.

Chris20cm · May 16

Yes, the shadowing, the separation anxiety, the resistance to any and all appointments for anything, the endless watching of old sitcoms like Friends and Roseann and the Office, the loss of a life of my own, the languishing of my bucket list items, ten years of this and I am at my limit too. I have many things left to do in this life. I am a great caregiver but now it's time for me to have a life too. I find refuge in my music and can spend time in my music room while monitoring DW, but now is the time for some big changes.

RetiredTeacher · May 16

https://alzconnected.org/discussion/comment/243260#Comment_243260

TY Carl46. It helps to know my emotions are "normal".

RetiredTeacher · May 16

Chris20cm,

How long have you and your wife been on this journey?

charley0419 · May 16

I will stay with my wife till I can do o more physically till my last breath if possible, sorry that’s how I feel.

Doingitalone · May 16

Your situation sounds Exactly like the one I'm in. Can't get my mind right about the caregiving ALL the time. Some days I'm at my wits end and will just get out without him to wash my car or get my hair done. Heck! I even look forward to going to the dentist now a days! Good luck. Hang in there!

Carl46 · May 16

Charley, your feeling is commendable and I feel the same way. However, she is receiving better care in MC than she received in our home in recent weeks. It's not like I abandoned her at a highway rest area. I still visit and make sure she is doing well, and I still advocate for her. I am still taking care of her. I am just not killing myself doing it.

I placed my wife on the advice of her physician, and on the advice of my physician. It does not benefit her if I ruin my health taking care her, but that was what was happening. This way, I can care for her to HER last breath, not leave her without an advocate after I take my last breath.

Bridge4 · May 16

Well-said Carl. I am nowhere near placement of my DW, even though she is very difficult and combative in early stage 5; but the guideline of knowing that MC can offer better support (which may vary for each of us) seems like a good transition point to watch for.

CampCarol · May 16

https://alzconnected.org/discussion/73055/how-to-get-right-in-my-head

I can totally relate, especially to your comment "It just feels like I'm leaving him behind if I'm moving forward." I would like to go and do something for me, but the guilt of him not being there with me is overwhelming. He is in MC now (day 3), and I know this is going to be a long adjustment for both of us. I feel like if I don't start taking better care of myself (I have let myself go for the past several years), I won't survive much longer. I too struggle with the concept of my needs being as important as his. You are not alone!

wose · May 16

Nope, you’re not alone. I’m basically hanging on by a thread. Even tho we follow all the dementia truths, it takes such a toll without a break for ourselves. My little one day trip to the ballpark by myself felt like I was deserting him, but I’m going to keep trying. I’m where you’re at. He’s fine, but he isn’t… what to do……I had a mammogram yesterday and went by myself and the nice lady apologized for any discomfort. I laughed and told her how much I was looking forward to having the test, just to be away from home for a couple of hours. I wish I could help us, but I can’t. I’m sure all stages are hell, but this combative state ( no fault of theirs ) is just so hard. He knows but really doesn’t. It’s pure turmoil for both of us, but He Forgets…. We can’t……I’m trying a very low dose of lexapro for him. Maybe it will help with the relentless agitation. He’s aware of his pills, so there’s that. I know the adage happy hubby happy wife, but it’s hard to keep that up without an outlet for us. I’m with ya girl, virtually at least💕💜

Biggles · May 16

https://alzconnected.org/discussion/comment/243260#Comment_243260

Thank you Carl you have given me some inspiration. On my down days I was beginning to think at 75 life was over. I am and always have been very independent and quite headstrong married 54 very adventurous and happy years and I now have to find patience compassion care and reliability mixed with as much humour as I can muster, which I do but it is hard. I have changed my tack a few times in handling the situation and I now find interesting or challenging things to do and accommodate my DH as best I can. My life saver at present is Disability Sailing a world wide organisation. I am a volunteer skipper and also on the Committee. I get to sail one of their wonderful little dinghies and also take disabled clients sailing. I don’t take my DH he goes with someone else, this is my break! I’ve taken to renovating our house starting small but taking charge of all the decisions, this has been a bit scary and challenging, but it means I have to deal with all sorts of business people. We go out to the off leash dog park (another group to chat to) we have marina walks (this is getting harder and slower) I now have a Companion Card so we can go to the theatre or pictures for 1/2 price (I don’t get cross if we have to leave early) I am not looking forward to the next decline. Please keep posting I find your posts so helpful. Thankyou.

Carl46 · May 16

You are very welcome, Biggles. I'm not an expert but if my perspective, based on my own experiences, is helpful I am glad to share them.

Thank you for the encouragement. I will continue to post if I think I have something to contribute.

Biggles · May 17

thankyou

BAG · May 17

https://alzconnected.org/discussion/73055/how-to-get-right-in-my-head

I can certainly relate to your situation. My therapist told me that “you are number one, take care of yourself first.” He also said that “you have two perfectly good legs, just walk away.” These comments have helped. I got a rescue dog that I walk several times a day and train to do tricks. I also hired a piano teacher and take lessons once a week. I invite understanding friends over to visit. It is helping me. Only small things but it helps. Just because you are married you do not have to watch tv with him constantly. It is okay to find things that you enjoy.

CindyBum · May 17

https://alzconnected.org/discussion/73055/how-to-get-right-in-my-head

I absolutely relate. Do it! I think you’re perfectly right in the head to see the challenge before you and to work to hold onto you in the midst of it. You matter and you’ll be a better support for your LO when you carve out space for yourself.

RetiredTeacher · May 17

https://alzconnected.org/discussion/comment/243404#Comment_243404

TY BAG. I have bern walking 2 miles in the morning before my husband and I go on our ebike and etrike. He is still able to take care of his needs. Once we spend time together each morning, I am planning afternoon activities that I enjoy. It is helping my mental health.

RetiredTeacher · May 17

Ty Cindy Bum.

How to get right in my head...

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