Stuck in the middle



My wife has been in MC for a little over a year. Our marriage was not great for the last 23 years but we are still married for 50 years this August. I still feel a commitment to her. How do I move on and have a life while still anchored to the past? I go see her almost every afternoon and some of the staff has become reliant on that so I can get her to eat her lunch. I think I want to travel a little but I feel like my place is here to comfort my wife. So I usually end up doing a little yard work or cleaning in the mornings and then go see her and then come home and read on this site of deal with other things, but I feel lost and trapped. I gave up everything for her, my business and friends (due to her delusions) they were mostly business connections and friends. Now I have to start over but I can't because the past is still the present. I know I am not alone in these feeling but how did others figure out how to deal with it. My wife is stage 6 moving toward 7 but she still knows who I am and wants me to be there.
Comments
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So, DW has been in MC for about eight weeks. I visit every couple of days, but I don't look forward to it. DW continues to complain she has nothing to do, she wants to be with me, she wants to be home. It's really hard to deflect her. She's really tenacious. I heard the same complaints when DW was home, and that's one of the reasons I moved her to MC (along with growing incontinence, my inability to leave her by herself, and my inability to find someone she would accept to stay with her for a few hours).
I've started to think about what a new, independent life might look like for me. I don't have answers. I would like to find a companion, but that's pretty hard for a 77-year-old, and harder since I think of myself as being in, like, my 50's. (How many ages are there? Chronological, physical, mental, emotional. Not all the same.)
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inform the staff at the MC that you are going to cut back on your visits because you will be taking some out of town trips. Then do so.
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Funny you should mention. We have a summer place in Maine that we've gone to for 50 years. I am, in fact, planning to go there at least for a five-week concert season.
I already spoke to the MC nurse. I was worried about being away for a long stretch. She said not to worry. DW will ask about me, and the nurse said they would tell her, "Oh, remember he was just here yesterday." That should satisfy DW. There are some benefits to DW's having no memory. 😯
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When I think about placement for my DW this is what I imagine. My DW ALZ wil still be the center of my life, but it will be a bit more tolerable and my wallet will be a lot lighter.
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When my spouse was stage 5 and early 6 I visited twice a week. Now I visit once a week, unless I'm out of town. I don't think he's aware of the passage of time. He's happy to see me, but I don't think he knows that I'm not there.
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I’m in Stage 8 and still stuck. I’m trying but it’s so difficult. I have to force myself to do anything. I know my DH would want me to live the rest of my life and be happy but how do you do that after going through what we have as caregivers? I’m going to meet family I haven’t seen in a year later this month. First time I’ve gone anywhere by myself. So take that trip. Force yourself if you must. She is being taken care of and doesn’t know if you visited her yesterday. 💜
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You have been one of the regulars here who i look forward to hearing from. You offer such good insights to caregiving someone with dementia. I appreciate your openness about your journey. I have often wondered what stage 8 would really be like. Right now, stage 5(?) I have all kinds of thoughts about what life will be like. But after years of near home confinement and a lot of solitude I wonder if I will be able to get myself out in the world again. I'm glad to hear you're not sitting still. Enjoy your family time. And thank you for all your wisdom.
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When we marry we agree to share a life , to be living together as one because we love and respect our partner . Sadly, this disease separates us physically many times and mentally . Moving to a loving supportive role to keep our self healthy isn't a betrayal . Whether you tango with a new person on a dance floor, boudoir , internet depending on your moral take , for lack of a better word, or just keep your self healthy by staying active and connected to the "real world" seems like what our loved one would want in their former rational minds.
If you'd said when they were well—" I'm going to isolate and just do rote maintenance functions" they wouldn't have supported that so don't do it to yourself .
The time factor with this disease is so hard to deal with - we tend to like to get through the yuck and "put it behind us" but this disease process goes on so long we could lose what time we have left if we wait for a blank slate .
And if the healthy partner goes first no one can take the same position as understanding loving caregiver. So then you'll have shortchanged the both of you.
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@BPS , I hear you. I brought DH home on hospice after 2 weeks in MC, and I went right back into my "housecat" mentality. Meaning here I am alone, inside looking out. I've gotten to the point where not much outside even interests me anymore. I'm afraid to leave him (even though I have 24 hour care), and there's no way I could do something fun because (1) I don't feel like it, and (2) I would feel hugely guilty knowing he's home bedridden. I know he doesn't want live like this, and I also know that he doesn't want me to live like this. Maybe it's a co-dependency thing; I’m hopeful that someday I will be able to get out, take better care of myself and learn to have fun again. You hang in there, this too shall pass…
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I'm definitely not a psychiatrist, but I think if nothing interests you, if you don't feel like doing anything, those are symptoms of depression. No one here would criticize you for doing what you need to do to get out of that state, whether that means seeing a shrink, getting anti-depressants, leaving the house for a day, an afternoon, an hour to do something fun. (Yes, I know, nothing feels like fun.) Maybe take a nature walk in a park, forest, lake, or beach to get out of your own head. You have a caregiver. You can do it. You need it. DH will be okay.
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Don't let anyone else judge you. Do what you think is best for the both of you. Only you have, and can, walked this path alone. Take care.
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I took care of my husband/household for 8 years. He died 9 years ago. Looking back I realize that almost all of the time I had something in my life that I enjoyed…all by myself. Sometimes it was "big". I studied a foreign language on line and bought some paints. Sometimes it was "little" like calling a friend (no, they did not call me). Sure there were times I felt like running away but they did not last.
It is hard to be alone and yes, being alone comes before death. I started missing my husband long before he died. I miss him still but even though I am alone I am pretty much not lonely.
My advice? Take a baby step into something that you enjoy. Just one little step. You will find the world still exists and that you are still a part of it.
The world I found myself in was desperately hard but I did it and it was with the help of so many here.
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Thank you for all you comments and support.
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Thanks for making this post. I’m in the beginnings of this nightmare. My LW is in stage 4, some stage 5. I keep thinking about my future and the journey I have ahead. Thinking about when MC must come, how often do I visit, at what point do I move on emotionally (start the makings of a new life) for self protection against depression, a loss of self purpose. I need people in my life, I’m a social person and have always been active. I also know the “out of site, out of mind” result happens when a person backs away from social opportunities dealing with my LW every day and just getting worn out. I never hear any positive, good coming out of what’s in front of me. It’s all doom and gloom, negative, hard, draining emotionally and nothing but a long, long years of years of a nightmare. How damn depressing it all makes me feel.
We had a shouting match at each other yesterday, She screamed in my face, so I screamed back. It was terrible, I didn’t want to be around her and went off in another part of the house the rest of the afternoon. I’m also finding I’m loosing my temper and emotions easier. It’s the frustration of living with someone that never does anything right. So, I’m having to redo everything she does. She almost burned down the kitchen 3 nights ago turning on a burner vs turning off the oven. I’m afraid for my health in the long term. I’m rambling, but maybe that’s ok.7 -
I am so happy to read these posts. DW is Stage 5, but also facing significant bowel surgery in a couple weeks, and may end up with a colostomy, which would be a nightmare. I had thought that we would go to assisted living together, but now it is just a matter of time before MC will be needed. The experience and opinions of others here is incredibly valuable for me. Thank you!
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A very close friend was diagnosed with dementia about 8 months ago. She’s still sweet, functional, but very forgetful. Her husband ended up resenting her for her inability to be who she used to be. He chose to leave. At first I thought he was a jerk when she told me he left her. But in reality, as hard as it was initially for both of them, his decision was the right one. They are both in a better place now. He told me he was getting so stressed and angry at the situation and knew it was hurting her and making things so much worse. He isn’t a horrible person, he’s just not equipped emotionally for what his wife is becoming. My point here is, we all have to make choices that not everyone will agree with and some will judge. So be it. No one lives in your shoes, but you.
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Your PWD is incapable of maintaining safety. She should not longer have unsupervised access to the stove, microwave, candles, chemicals or anything dangerous. You must dementia-proof the home. Do this in the background. She has anosognosia, she is not aware that she has dementia. Don't tell her.
Iris
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how do you dementia proof a gas stove? Or an oven? She keeps surprising me. Last night I discovered she had taken a second and possibly a third dose of her nighttime medications. I didn’t panic but did call 911 to be on the safe side. She was fine thru the night. She will no longer self medicate.
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I used a lot of products sold for “ baby proofing”. Covers for doorknobs and knobs on stove. Latch for refrigerator. Etc. My husband liked to get up at night and turn every bathroom faucet on full blast then leave them on. So every night I would turn off the water. You figure things out.
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Take the knobs off? Dementia proof the house as you would a toddler. Some people use baby gates into the kitchen and their LO can’t figure out how to open them. Put locks on the doors inside and all cabinet doors. Even the fridge if you have to. Put away all chemicals and medications. If you are unable to keep her safe perhaps place her in memory care? We understand how difficult it is.
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We likely all wonder about this, so I think it is good to get it out in front. My DW is about in stage 6 now. I always believed in the wedding vows as it relates to other relationships, but to each his/her own. But that doesn't mean to me that I can't begin to do more on my own as it continually gets more difficult and our life together no longer exists. I still have a duty. Travel and socializing more with friends are good for us I expect. One foot in the old life, one foot in the new.
Best wishes with your final challenges. You have endured a lot.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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