1. < Caregivers: Dementia

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.

wmehan | @wmehan | Sep 18 3:35pm
In reply to @billiekip "I'm actually sitting around waiting for my husband to arise at 1pm and hopefully hasn't left..." + (show)
@billiekip

I'm actually sitting around waiting for my husband to arise at 1pm and hopefully hasn't left a puddle. Your friend who told you to remember the man you married means well but is not at all helpful. Now is now. Then is then. You are living with the husband who is in your life right now and, for me, it isn't much fun. I just read through two years of notes I've taken about this slide to ALZ. So much was obvious, but I assumed it was just old age; snarkiness, sarcastic use of "Mommy" referring to me, anger issues, frustrations in his inability to do things anymore like use the microwave. Problems with our new car that were his own error. On and on. I just feel at 80, I would like time to focus on my own life and needs. I feel the compass pointing closer and closer to a memory care center for him; space and time for me; a change of role to a friendly perky visitor instead of a bedraggled exhausted caretaker. My daughter recently visited, and I saw what patience she used with him and what a good response she got from him. I could do that for 5 days too. I just don't have an inner caretaker for the long run to my own detriment and his. Looking at the past doesn't do me any good; I appreciate the good long run we had, but it doesn't change today or tomorrow. I hope it does for you.

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Believe me it is not all that happy. When I have to clean the bathroom floor 2 x today, get him to take a shower, cook dinner and he takes 2 bites and decides he’s going to bed. I can continue with this list. When I snap and start talking in a non caring voice I latter get upset with myself I feel like I am dealing with a 3 yr old who doesn’t know how to dress himself. I didn’t intend to say things are just rosy, it helps me to curb my anger at him. I know he can’t help it and I realize it ok for me to let off steam.

REPLY
1 reply
mariana739 | @mariana739 | Sep 18 4:04pm
In reply to @billiekip "I'm actually sitting around waiting for my husband to arise at 1pm and hopefully hasn't left..." + (show)
@billiekip

I'm actually sitting around waiting for my husband to arise at 1pm and hopefully hasn't left a puddle. Your friend who told you to remember the man you married means well but is not at all helpful. Now is now. Then is then. You are living with the husband who is in your life right now and, for me, it isn't much fun. I just read through two years of notes I've taken about this slide to ALZ. So much was obvious, but I assumed it was just old age; snarkiness, sarcastic use of "Mommy" referring to me, anger issues, frustrations in his inability to do things anymore like use the microwave. Problems with our new car that were his own error. On and on. I just feel at 80, I would like time to focus on my own life and needs. I feel the compass pointing closer and closer to a memory care center for him; space and time for me; a change of role to a friendly perky visitor instead of a bedraggled exhausted caretaker. My daughter recently visited, and I saw what patience she used with him and what a good response she got from him. I could do that for 5 days too. I just don't have an inner caretaker for the long run to my own detriment and his. Looking at the past doesn't do me any good; I appreciate the good long run we had, but it doesn't change today or tomorrow. I hope it does for you.

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I agree with you a 100%.
If I was in your shoes and had the means to pay for a care facility I’d moved him there NOW. You deserve to live your last years in peace.

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1 reply
billiekip | @billiekip | Sep 18 4:08pm
In reply to @wmehan "Believe me it is not all that happy. When I have to clean the bathroom floor..." + (show)
@wmehan

Believe me it is not all that happy. When I have to clean the bathroom floor 2 x today, get him to take a shower, cook dinner and he takes 2 bites and decides he’s going to bed. I can continue with this list. When I snap and start talking in a non caring voice I latter get upset with myself I feel like I am dealing with a 3 yr old who doesn’t know how to dress himself. I didn’t intend to say things are just rosy, it helps me to curb my anger at him. I know he can’t help it and I realize it ok for me to let off steam.

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I don't think I've been this tired since I was a nursing mother. It is the same physical and emotional drain that is exhausting which results in a snappy voice. My husband flat out refused to leave a local bench to come home the other night and I was furious. I can be a caretaker when he cooperates. I don't require affection or appreciation, just "do it." Yes, it is like dealing with a young child all over again with no hope of them growing out of the stage. Thank you for reminding me that "he can't help it." I do forget that.
He isn't in pain or having to have chemo, so I should be grateful. It could be way worse.

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billiekip | @billiekip | Sep 18 4:20pm
In reply to @mariana739 "I agree with you a 100%. If I was in your shoes and had the means..." + (show)
@mariana739

I agree with you a 100%.
If I was in your shoes and had the means to pay for a care facility I’d moved him there NOW. You deserve to live your last years in peace.

Jump to this post

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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1 reply
mariana739 | @mariana739 | Sep 18 5:01pm

Yes, I’m terrified to think what will the cost of memory care will be years from now when he qualifies to be moved to one. More and more the thought of divorcing him now, before the disease advances to the phase when he’d require 24/7 care from me without any family to help, comes to mind. I think I need to consult an elder law lawyer

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1 reply
celia16 | @celia16 | Sep 19 1:31am
In reply to @mariana739 "Yes, I’m terrified to think what will the cost of memory care will be years from..." + (show)
@mariana739

Yes, I’m terrified to think what will the cost of memory care will be years from now when he qualifies to be moved to one. More and more the thought of divorcing him now, before the disease advances to the phase when he’d require 24/7 care from me without any family to help, comes to mind. I think I need to consult an elder law lawyer

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Yes! Get a consult with and elder law attorney who focuses on estate planning for those who may need memory care or skilled nursing. Some states have resources for memory care. The attorney can provide options based on your financial situation,

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jmg60 | @jmg60 | Sep 19 11:12am
In reply to @cheryl16 "Sometimes it’s you who is ready for him to be in memory care. That’s where I..." + (show)
@cheryl16

Sometimes it’s you who is ready for him to be in memory care. That’s where I feel I’m at. I can’t live like this anymore. he shadows me all the time, constantly tells me he loves me, but doesn’t know I’m his wife. He doesn’t wear his wedding ring anymore. It means nothing to him. I can’t fill his days and can’t bear to go through my own. I think I’m going to take the plunge and place him very soon. I found a good place. Just waiting to see if I can really afford it.
Just started reading a book I’m finding very instructive. Travelers to unimaginable lands by Dasha Kiper.
Stories of Dementia, TheCaregiver and The Human Brain

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I think you make a great point, cheryl16! It feels selfish initially, but after months and months, I realize it is not. You are saving your own self, and in the process letting professionals manage your husbands' daily care. I believe when my husband is in his new space, (which is lovely and I told my daughter to go ahead a place me there when/if I need it), that I will be a better wife to him. He doesn't really have that concept - but I will be happy and joyful in his presence because the hard stuff is taken care of, and I have time to be myself. We are scheduled for his move in on 10/1, we try to discuss it but his aphasia is very severe and the communication is really poor, both comprehension and speech. My biggest fear is that he can't do assisted with support, which is all there is available currently at the place my daughter and I like. He will need to be assessed by the nurse via zoom, as the facility is another state. I am moving him and myself to AZ where our oldest daughter and family are nearby, and memory care is at least 1/3 cheaper. I will miss the beach weather, for sure, but we do what we need to do in this life, as you that are reading this already know. If he fails the assessment, I think they will allow me to still place him but require me to hire a private caregiver as well. I can come daily of course, but would hire someone for 5/6 hours a day or as required. This is going to be really expensive for a while - so am praying he does ok on the assessment, and that a memory care apartment opens up soon- who knows. Everyday is a surprise. But I KNOW this is the right thing. Think about what our loved ones would want our life to be. I promise you my husband would have said, "If I am not me, cannot care for myself, put me someplace safe and have a nice life. Preferably with good food." He would never ask that his wife wipe his bottom, or brush his teeth and dress him. We each know our loved one is not the same person, we love the memory of who they were but we must move forward, always, to the best possible life for all. Good luck everyone, remember to give yourself the same love, grace, and patience you give your husband/wife/parent.

REPLY
1 reply
jmg60 | @jmg60 | Sep 19 11:17am
In reply to @billiekip "I'm actually sitting around waiting for my husband to arise at 1pm and hopefully hasn't left..." + (show)
@billiekip

I'm actually sitting around waiting for my husband to arise at 1pm and hopefully hasn't left a puddle. Your friend who told you to remember the man you married means well but is not at all helpful. Now is now. Then is then. You are living with the husband who is in your life right now and, for me, it isn't much fun. I just read through two years of notes I've taken about this slide to ALZ. So much was obvious, but I assumed it was just old age; snarkiness, sarcastic use of "Mommy" referring to me, anger issues, frustrations in his inability to do things anymore like use the microwave. Problems with our new car that were his own error. On and on. I just feel at 80, I would like time to focus on my own life and needs. I feel the compass pointing closer and closer to a memory care center for him; space and time for me; a change of role to a friendly perky visitor instead of a bedraggled exhausted caretaker. My daughter recently visited, and I saw what patience she used with him and what a good response she got from him. I could do that for 5 days too. I just don't have an inner caretaker for the long run to my own detriment and his. Looking at the past doesn't do me any good; I appreciate the good long run we had, but it doesn't change today or tomorrow. I hope it does for you.

Jump to this post

You have much clarity, @billiekip. I think you deserve your life back -and your husband would have probably wanted that for you, big hug.

REPLY
jehjeh | @jehjeh | Sep 19 12:37pm
In reply to @cheryl16 "Sometimes it’s you who is ready for him to be in memory care. That’s where I..." + (show)
@cheryl16

Sometimes it’s you who is ready for him to be in memory care. That’s where I feel I’m at. I can’t live like this anymore. he shadows me all the time, constantly tells me he loves me, but doesn’t know I’m his wife. He doesn’t wear his wedding ring anymore. It means nothing to him. I can’t fill his days and can’t bear to go through my own. I think I’m going to take the plunge and place him very soon. I found a good place. Just waiting to see if I can really afford it.
Just started reading a book I’m finding very instructive. Travelers to unimaginable lands by Dasha Kiper.
Stories of Dementia, TheCaregiver and The Human Brain

Jump to this post

@cheryl16

Thank you for your thoughts, especially the first sentence. I have never looked at it as me being ready. It's so easy to always put my husband's needs first to the point of not even having my needs on my radar.

I'm going to look for that book. I'll be thinking of you as you take this next step.
jehjeh

REPLY
1 reply
jehjeh | @jehjeh | Sep 19 1:21pm
In reply to @billiekip "I'm actually sitting around waiting for my husband to arise at 1pm and hopefully hasn't left..." + (show)
@billiekip

I'm actually sitting around waiting for my husband to arise at 1pm and hopefully hasn't left a puddle. Your friend who told you to remember the man you married means well but is not at all helpful. Now is now. Then is then. You are living with the husband who is in your life right now and, for me, it isn't much fun. I just read through two years of notes I've taken about this slide to ALZ. So much was obvious, but I assumed it was just old age; snarkiness, sarcastic use of "Mommy" referring to me, anger issues, frustrations in his inability to do things anymore like use the microwave. Problems with our new car that were his own error. On and on. I just feel at 80, I would like time to focus on my own life and needs. I feel the compass pointing closer and closer to a memory care center for him; space and time for me; a change of role to a friendly perky visitor instead of a bedraggled exhausted caretaker. My daughter recently visited, and I saw what patience she used with him and what a good response she got from him. I could do that for 5 days too. I just don't have an inner caretaker for the long run to my own detriment and his. Looking at the past doesn't do me any good; I appreciate the good long run we had, but it doesn't change today or tomorrow. I hope it does for you.

Jump to this post

@billiekip
You are so right...then was then, now is now. Perhaps remembering who he was and how much love we shared in the past serves to remind me that he deserves care and respect now. But I think it should also remind me that I deserve the same. Yes, it's easy to muster the physical and emotional energy needed for a short time. But after years of constant decline with no timer telling you this will be over in a few days and then I'll go back to my real life, it's maddening. I'm sorry to hear the struggles others are having but glad to know I'm not alone.

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