Feeling lost

LostandAlone · December 2023

I’m new here. My wife is at the early stages, she is 67 and I am 60. I still have to work so our lives have a lot of moving pieces. Slowly I have been watching my wife deteriorate. The past 6 months it seems like even the easier tasks are getting harder for her & take her a lot more time. It’s like her problem solving skills are out of whack. This means she is asking me what to do all day long, which hinders me from having a clear head to do what I need to do. This stresses me out and I know she can tell when I’m stressed so that then stresses her out and she clearly looks sad and feels bad. So I have to try to hide how I feel because I dont want her sad. My health is marginal so I need her help with things but am finding I can’t count on her as much especially if I’m not there to redirect her. I do t want to tell her how I feel because I don’t want her to feel bad and really there is no one to talk to who understands. Her daughters dislike me so I can’t talk to them about this, I tried in the beginning. So mostly they talk just to her, which is fine, until they start making plans and not circling me in so I even know there is a plan. My wife forgets to tell me about a plan that might be in the works and they don’t tell me so I end up blindsided at the last minute. This causes a rift often, which leaves me just shutting down because I don’t want to upset her further. I live my wife so much, I feel so alone and empty. I dont know how to stop crying some days from the overwhelm. I just need to know I’m not the only one feeling this way.

charley0419 · December 2023

your not alone this is great place for you for help. Your family issues don’t help things much I feel for you. Your young but get your POA and speak to someone about elder care and what to do about your finances important

BPS · December 2023

You are definitely not the only one that has those feeling. For me they come in waves. Sometimes things don't seem to bother me to much because I know these things are common with this disease, but other times it just hits me like a ton of bricks. I don't like the waves but they keep coming and the going. A lot of people here have more experience in all this and can be more helpful.

mrahope · December 2023

So sorry things are so tough for you right now. Family issues can come to the forefront during the holidays and when you add dementia into the mix it seems to magnify everything. I know this hurts you.

You don't mention if your DW has been formally diagnosed with a dementia disorder. It's important to go ahead and visit the doctor if you haven't already. Sometimes there are other diseases/problems that can look like dementia but are treatable. Also, if you and your DW choose medications, some may help more readily if started early.

I hear you about all the "moving pieces", too. It's hard to take care of yourself, your DW and manage the rest of the responsibilities of a household, too. And if you, also, have health issues that must be factored in as well.

I, too, would recommend taking a long, hard look at your plans and finances. Many here will recommend seeking out a CELA (certified elder law attorney) and I would say that this is worth doing It may take some stress away from you to know what is and is not possible based on where you live and your financial picture. Getting the proper documents in order will ensure that you can manage these things for both you and your DW.

Also, just in my experience, the "overwhelm" does come and go. Just handle what you can now and forgive yourself for not getting to everything. It's OK to feel sad, it comes with the territory. Just my .02! YMMV

M1 · December 2023

Welcome to the forum, you have come to a group that understands and can help you cope.

There are a lot of spouses here in blended family situations. Definitely can be tricky when there are adult children of the person with dementia. All the more reason you need to consult your wife, to the degree she is still able, and a certified elder law attorney, because at some point in the not too distant future someone, be it you or her daughters, are going to have to take over decision making for her and may have to make decisions about whether she needs memory care. I'm so sorry your health is a complicating factor, but your well-being matters too. A competent, neutral third party may be able to help determine what is in everyone's best interest in this situation and can mitigate any personal animosity that is present.

Glad you found us. Keep us posted.

2Hands · January 7

Wow, I remember the fights we had , getting my Mom diagnosed. I felt like the entire family was against me.

I would say "Dad, Mom is forgetting things:"

Then Mom would get defensive "I am not forgetting things".

I would get upset and forget where i put my car keys... So then I could not even storm off in a huff.

Hohenzollern · January 14

https://alzconnected.org/discussion/67521/feeling-lost

Give yourself a bit of a break. This is hard to do when your spouse is "right on top of you" with questions over and over and forgetting things constantly. You may not be able to steer the course concerning her disease progression, but you CAN exert control over your reactions to it. Part of this may mean scheduling time to be away from her for a few hours every other day. This has helped me a lot. My wife asks the same questions over and over and forgets every single day. She has no daughters from a former marriage as yours does, but my former wife had two adult children that never accepted me. It was an open wound until she passed away unexpectedly. I never got used to being on the "outside" looking in on a marriage that was otherwise good but flawed. Try to remember that you are doing a good job and that you will not always succeed. The outcome is not in your hands, but you WILL make mistakes and that is normal. It is OKAY.

avieDa921) · January 15

When you first find out the diagnosis, you think your normal world is ending. At least that’s the way I felt 6 years ago when my DA was diagnosed with ALZ. I cried a lot because my DA usually made all the decisions & could fix anything & now it was up to me to take over all the responsibilities of everything. Luckily we had already set up our Living Trust & Health Directives 2 years prior. It’s not easy getting used to each other in a new way, There will be frustration & anger from both of you because it is hard to accept what is now & in the future. Just remember to always live one day at a time! Worrying about the next day makes things worse, trust me! You will have good days, bad days & yes there will be times you will laugh! You’re not alone, glad you’re here!!

Stan2 · January 17

You are definitely not alone, and if you don't find answers here you will at least find support. I know this sounds trite but you need to find some way to take care of yourself, some way to be in a different space, even if only for a few minutes at a time. You'll be of no value to your LO if you fall apart. Try to take advantage of the good times and move past the bad. Most of all don't be a "right fighter". It doesn't matter who is right most of the time.

Stan2 · January 17

mnev321 · January 23

https://alzconnected.org/discussion/comment/192297#Comment_192297

Waves, blindsided, ton of bricks. In that order. Definitely the wave thing though. Could be days or months. Different phases.

rplourde50 · January 23

https://alzconnected.org/discussion/67521/feeling-lost

I feel your dilemma. My wife's a similar stage. Recently, I negotiated with work to allow to be a 20 hour + employee. This allows me to keep benefits, most importantly. The salary is reduced of course but it's taken a load of stress off and allows me to pay more attention to her. Maybe you could look into this sort of arrangement as a compromise position?

Feeling lost

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