I feel like start running and not look back!

Posted by mariana739 @mariana739, Aug 10 5:39pm

Hello,
I haven't been back here for a while. Today is been a bad day seeing my husband behavior. He was diagnosed with MCD on Jan 2023, he’s been taking the pills since then, I never expected the pills to do a significant change BTW, his memory has gotten worse but it's not that what is driving me mad.
He spends all his waking hours, which sometimes go until 1-2am, working outside in the yard (this is AZ, 3 digits heat now) on his "projects". The problem is those projects always result in leaving the yard worse than it was, look at the photos. These are from the latest one: a water feature he was going to built among the retaining wall rocks. The first one is from when I thought he was finished with it, is nothing like you'd expect a water feature to be but I thought thanks God he’s done with it. The second photo is from today when he’s undone all that and he keeps digging
around for what? I don't know. Then he’s breaking the cement on the border of the patio bricks, if I ask why he draws a blank.
Selling the house would be the only way to get money in the event he lives long enough for the disease to get to the last stage and I won't accept to be his only caregiver since we have no family to rely on. I feel so stressed thinking how his doing will decrease the value of the house.
What can I do?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@joanhed

You know I have joined support groups online before and no one was honest. It really made me angry. But this Mayo Clinic group is wonderful. I appreciate hearing about all the anger, unvarnished chaos and fear that we caregivers experience. I feel less alone. My husband used to be a kind, generous, sweet man. No longer. He gets frustrated when he screws something up or can't do something, which is always. Then he screams at me in baby talk which sets my hair on end. This is the death of our marriage.

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@joanhed I feel the same way about this group. When trying to discuss our situation with friends or family I think I'm coming across as a complainer or even embellishing the events we experience. No one who hasn't been through this understands the disorientation that comes with personality changes with no warning. I can walk into the room and find that he's angry with me for some imagined reason. A few minutes later he loves me more than words can say. Then there's the fear that I'll leave him and he'll be lost. His tears at those times break my heart. I do worry about him if anything should happen to me. He won't let anyone else help him with anything so caregivers have been pointless. So much time lost for both of us, yet here we are. Feels hopeless sometimes.

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@billiekip

Thank you. It will happen. I really appreciate your "atta girl." My daughters, sister-in-law, everyone has my back and would be totally supportive when I finally make the move. My mother- in -law lived to 93 with mild dementia. No one can predict the future, but $ to cover the years ahead for both of us must be considered. My friend put her husband into a nursing home at the behest of Hospice. They told her that he had two weeks to live. Her husband lived for 15 months at $15,000 per month and wiped out his life savings.

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One never knows what the future holds. Our sons have invited us to live with them but I don’t want to put our daughter in laws to go through this. They all have their own crosses to bear. They don’t need any extra. We had the same pt said a trip back to see his sister(1000 miles car trip) would be good. He enjoyed seeing members of his family. I was exhausted. Was told to get someone in to help & for me to get out. Only thing if I am not around he becomes anxious looking for me. Fortunately he is not a wanderer. Yes it is difficult it was how he was doing his finances before being diagnosed that was bad. His philosophy changed to don’t worry we’ll pay this later. Credit cards were out of control.

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@wmehan

One never knows what the future holds. Our sons have invited us to live with them but I don’t want to put our daughter in laws to go through this. They all have their own crosses to bear. They don’t need any extra. We had the same pt said a trip back to see his sister(1000 miles car trip) would be good. He enjoyed seeing members of his family. I was exhausted. Was told to get someone in to help & for me to get out. Only thing if I am not around he becomes anxious looking for me. Fortunately he is not a wanderer. Yes it is difficult it was how he was doing his finances before being diagnosed that was bad. His philosophy changed to don’t worry we’ll pay this later. Credit cards were out of control.

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@wmehan I find it extremely frustrating when well meaning friends, family, even medical professionals suggest something they think may be good for hubby with no regard for how it will affect me. Especially when the suggestion is made in front of him. He then becomes obsessed with the idea (of travel, dinner out, trip to the theater...) . Often, someone will tell him what he needs to do to get medical attention and I don't know what they said, only know that whatever it was made him scared and anxious. The worst was when he was in hospital or skilled nursing and providers asked if I was spending the night, in front of hubby. Didn't they understand this was the only respite I could get?

I saw this with my mom and dad when he had dementia. Everyone trying to help him and never considered the stress on her. Fortunately, they had 6 children who recognized her needs and moved him to memory care when the time came. Wish we had done it sooner. It would have been better for them both.

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@wmehan

One never knows what the future holds. Our sons have invited us to live with them but I don’t want to put our daughter in laws to go through this. They all have their own crosses to bear. They don’t need any extra. We had the same pt said a trip back to see his sister(1000 miles car trip) would be good. He enjoyed seeing members of his family. I was exhausted. Was told to get someone in to help & for me to get out. Only thing if I am not around he becomes anxious looking for me. Fortunately he is not a wanderer. Yes it is difficult it was how he was doing his finances before being diagnosed that was bad. His philosophy changed to don’t worry we’ll pay this later. Credit cards were out of control.

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@wmehan I’m so sorry that people are thoughtless at times. What you might do is write a note (on the portal) to these doctors and say exactly what you said here. Doctors, and others, think they are being helpful, but…..
Can you tell us what you’re next plan will be?

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@mariana739

We moved into this house in 2021, to this day the room who was to be his studio and the third garage who was to be his workshop are still packed with his stuff, tools, wood remanents, etc. If I dare to suggest why doesn’t he spend time organizing those rooms he doesn’t like it and it ends in a horrible fight. The same if I suggest he volunteers at a fancy thrift store close by where I see all the volunteers are about his age. He’s a talker and I know he’d find people he could make friends there with easily, but that’s a resonant no as well. And something I didn’t mention before but hit me when I read Chris’s post is this: since he retired, my husband was always finding things to fix or change around the house before he was sick with this but my opinion about his projects never had or has any weight, if he asked for it I quickly learned the only answer that wouldn’t cause a fight was “ wow that’s a great idea” any other suggestions for a different manner to do it were never taken in well.
To put in a few words he has never been an easy person to live with, so I don’t even have those memories of the “good, happy times” we lived together to think off when it gets though now. My huge mistake was to not have gotten a divorce years ago before all this. As we all know hindsight is a beautiful thing.
Please don’t misinterpret me, I do appreciate every one of the comments I receive here from people who had a better history as a couple before the husbands got sick but I wanted to make my situation clearer so you know where I’m coming from. Thank you all

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I also feel I should have ended my marriage decades ago, and now I have to deal with his dementia. I do it because it’s the right thing to do, and I care for him with love.

Just want to say I understand your situation now. Funny how life turns out.

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@jehjeh

@wmehan I find it extremely frustrating when well meaning friends, family, even medical professionals suggest something they think may be good for hubby with no regard for how it will affect me. Especially when the suggestion is made in front of him. He then becomes obsessed with the idea (of travel, dinner out, trip to the theater...) . Often, someone will tell him what he needs to do to get medical attention and I don't know what they said, only know that whatever it was made him scared and anxious. The worst was when he was in hospital or skilled nursing and providers asked if I was spending the night, in front of hubby. Didn't they understand this was the only respite I could get?

I saw this with my mom and dad when he had dementia. Everyone trying to help him and never considered the stress on her. Fortunately, they had 6 children who recognized her needs and moved him to memory care when the time came. Wish we had done it sooner. It would have been better for them both.

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Hi there,
your post really touched a nerve with me. My husband was diagnosed 2 years ago and even with treatment I can see how the disease is advancing. He is irritable all the time and my patience has a limit, so we end having awful arguments very often.
The thing is that no matter where I go to ask for advice on how to deal with him it's always the same: EVERYTHING is aimed at making his life easier with no regard to how mine gets more difficult by the day. " just go along with whatever he says", "look for ways to distract him", etc.
Who actually cares about us, the wives living with this 24/7 without an end in sight?

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Has anyone actually gotten their lived one an evaluation and then admission into a nursing home? Normally, I’d say Memory Care, in an assisted living, but he won’t qualify. Think he will qualify for nursing home.

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@celia16

Has anyone actually gotten their lived one an evaluation and then admission into a nursing home? Normally, I’d say Memory Care, in an assisted living, but he won’t qualify. Think he will qualify for nursing home.

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@celia16 My only experience with this was when my father needed care 20 years ago. Initially, he went to memory care but suffered a stroke after 6 months and ended up in skilled nursing. He was deemed physically well enough to go home but his dementia was too far advanced for that. Insurance, therefore, would not pay for him to be there so we paid out of pocket. ($5,000 per month at that time) I had power of attorney so I was able to sign the paperwork. Insurance did not consider dementia to be a reason for a patient to be cared for outside the home but doesn't cover any in home care either.

It was terrible being in this limbo. I don't think insurance coverage has changed.

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@mariana739

Hi there,
your post really touched a nerve with me. My husband was diagnosed 2 years ago and even with treatment I can see how the disease is advancing. He is irritable all the time and my patience has a limit, so we end having awful arguments very often.
The thing is that no matter where I go to ask for advice on how to deal with him it's always the same: EVERYTHING is aimed at making his life easier with no regard to how mine gets more difficult by the day. " just go along with whatever he says", "look for ways to distract him", etc.
Who actually cares about us, the wives living with this 24/7 without an end in sight?

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I feel your pain. At the beginning of my husband's diagnosis (2021) it seemed like everything I read or what was told, was how to make him comfortable and worthy, etc. and not much about the caregiver and what i would be going thru and i felt like I was going out of my mind. I finally got help with what I am going thru with local support groups. What a difference this has made. Everyone's journey is unique through the progression so being able to hear how others are handling it has been a tremendous help. This forum has helped also, but i also enjoy the interaction and conversations I get with the support groups. My husband has moderate to severe primary progressive aphasia so conversations are almost non existent.
Sending hugs and strength to you

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@bayviewgal

I feel your pain. At the beginning of my husband's diagnosis (2021) it seemed like everything I read or what was told, was how to make him comfortable and worthy, etc. and not much about the caregiver and what i would be going thru and i felt like I was going out of my mind. I finally got help with what I am going thru with local support groups. What a difference this has made. Everyone's journey is unique through the progression so being able to hear how others are handling it has been a tremendous help. This forum has helped also, but i also enjoy the interaction and conversations I get with the support groups. My husband has moderate to severe primary progressive aphasia so conversations are almost non existent.
Sending hugs and strength to you

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I’m quite curious about this condition. Besides the loss of verbal skills, what cognitive difference do you see?

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