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?

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@mariana739

Husband had one done, we will know results in 2 weeks when we have appointment with the neurologist once he has reviewed both the MRI plus the neurological evaluation from yesterday.
I feel desperate too thinking of what’s coming , he’s 83 and no other serious conditions. It scares me to death to think he could live for another 10 years or so. It helps a lot to see here that I’m not the only one feeling like that. Thank you all

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I often think the same thing what if my husband who is 85 lives for another 10 years I would then be 86. I hate, hate myself for even thinking of this. How could I. My family is in the UK and I doubt that it would be possible to go and visit now because of the mood swings I doubt anyone would understand and I want them to remember the man he was. I think of the future without him and being able to go to visit and again hate myself for this it’s as if I am planning my future without him, which I am.
Now I am crying.

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@joanhed

Our neurologist is awful. In 2 years, I've never met him. Appointment on 8/16th will be different. I want some help, not just him drawing a stupid clock. I will ask for a social worker, too.

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Good for you! We the spouses need help too, even if it’s only someone who can listen and understand.

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@jeanadair123

I often think the same thing what if my husband who is 85 lives for another 10 years I would then be 86. I hate, hate myself for even thinking of this. How could I. My family is in the UK and I doubt that it would be possible to go and visit now because of the mood swings I doubt anyone would understand and I want them to remember the man he was. I think of the future without him and being able to go to visit and again hate myself for this it’s as if I am planning my future without him, which I am.
Now I am crying.

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Personally I don’t think anybody should be expected to sacrifice his/her own health by being the sole 24/7 caregiver of a person who most of the time is not even aware of where he/she is or doesn’t even recognize the caregiver. I know that if my husband lives long enough to get to that stage of the disease I will do my best to find a way to put him in an institution. Just think, who will take care of YOU when he finally dies and you are left in worse health because of all the years of continued physical and emotional stress?

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@mariana739

Personally I don’t think anybody should be expected to sacrifice his/her own health by being the sole 24/7 caregiver of a person who most of the time is not even aware of where he/she is or doesn’t even recognize the caregiver. I know that if my husband lives long enough to get to that stage of the disease I will do my best to find a way to put him in an institution. Just think, who will take care of YOU when he finally dies and you are left in worse health because of all the years of continued physical and emotional stress?

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I have also thought what if we have to sell the house to pay for this, but I am not putting him if it came to it which I hope it doesn’t in a county facility. Like you there is only me.
I’m being very selfish because if we sold the house that could affect my style of living as my retirement would possibly have to now pay for an apartment and we live in a very expensive area. Well! Let’s not what if? I just think about this one has to be prepared Incase. Take care and breathe occasionally. I really feel for you.

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@jeanadair123

I am very independent and lacking patience, which I am trying so hard to change. My girlfriend said use the word okay I must say that helped a lot. We seem to have good days as long as I agree with everything he says, of course there is no point in stating my thoughts. I just try and have a good day and remember the man I love so much.
He is now having in home physical therapy which is great for his fractured back, it’s absolutely amazing the difference and most of all he is not fighting me on this.
It’s hard but what can one do, just plod along and hug him lots.

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I just read the book Slow Dancing with a Stranger. Enlightening but not encouraging. Meryl Comer's husband died 24 years after being diagnosed with early onset ALZ at age 58 !! And she cared for him at home. Truly heroic.

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Hi Gloro,
I’m in awe of your resilience! How have you managed to keep yourself from burn out or simply exhaustion for such a long time?

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@4goakley

I just read the book Slow Dancing with a Stranger. Enlightening but not encouraging. Meryl Comer's husband died 24 years after being diagnosed with early onset ALZ at age 58 !! And she cared for him at home. Truly heroic.

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I better not read it! Having to take care of him at home if he gets to the last stages and we can’t afford an institution is my worst nightmare, I just know that I wouldn’t last very long under that kind of 24/7 stress.

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@jeanadair123

I often think the same thing what if my husband who is 85 lives for another 10 years I would then be 86. I hate, hate myself for even thinking of this. How could I. My family is in the UK and I doubt that it would be possible to go and visit now because of the mood swings I doubt anyone would understand and I want them to remember the man he was. I think of the future without him and being able to go to visit and again hate myself for this it’s as if I am planning my future without him, which I am.
Now I am crying.

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@jeanadair123 I share your feelings about thinking about the future and feel guilt for it. I know there will come a time when my hubby must be cared for someplace other than home. And the day will come when he's gone from this life. I also feel like I'm running out of time to live my life. At this point I can't leave the house for more than 30 minutes.

I think it's natural for our thoughts to go to a time down the road when those changes occur. In fact, this is my way of coping. "It won't always be like this"

Hang in there. jeh

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@jehjeh

@jeanadair123 I share your feelings about thinking about the future and feel guilt for it. I know there will come a time when my hubby must be cared for someplace other than home. And the day will come when he's gone from this life. I also feel like I'm running out of time to live my life. At this point I can't leave the house for more than 30 minutes.

I think it's natural for our thoughts to go to a time down the road when those changes occur. In fact, this is my way of coping. "It won't always be like this"

Hang in there. jeh

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I feel the same way - I am 72 and so many things I want to do with my grandkids and for myself. I would love to have the old him back, but since I cannot, I feel guilty wishing he would die before things get worse. It is scary wondering where this path will take us.

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@cmk1952

I feel the same way - I am 72 and so many things I want to do with my grandkids and for myself. I would love to have the old him back, but since I cannot, I feel guilty wishing he would die before things get worse. It is scary wondering where this path will take us.

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My heart is hurting
Yesterday my husband had a fall - broke some ribs and fractured his spine. They are keeping him in the hospital. Doctors are talking of nursing care until he is healed and then memory care. This seems like an answer to prayer in a way, but I am feeling so guilty —- thought I was ready for this, but it is so lonely here without him🥲

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