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.

@jmg60

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.

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Best wishes with everything!

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@jehjeh

@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

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Thank you, jehjeh.
This is so difficult. I wake up some mornings feeling panicky and think I shouldn’t move him now. He tells me he loves me all the time. I know he loves our little dog. But we share meals in silence and have no real conversations the rest of the day. I know he can’t distinguish between love and need, not that it’s an easy distinction to make. I want to believe he will do better in a more stimulating environment, attended to by staff who (hopefully) aren’t burnt out the way I am.
I don’t know how I’ll be when he’s gone and I’m missing him - I know I will still miss this diminished version of him.
BTW- Do read Travels to Unimaginable Lands. It deals with these issues with insight and compassion.
And thanks for your thoughts, and always know I will try to help you in any way I can. xxx

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@saa76

I almost thought I wrote this. Keep venting online because there is someone out there who needs to know they’re not alone. ME!

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@saa76, you're so right that one never knows when a post someone makes just hits the mark. I, too, thank @mariana739 for speaking frankly and honestly about caring, caregiving, and just wanting to run away from it all. Venting not only permitted, but encouraged. The pressure cooker has to blow sometime, somewhere. This is a safe place to do it.

Saa, what is your caregiving situation? How are you doing today?

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Hi,
It’s worse now. The neurologist said he should not be driving, when Richard did not seem to agree with that the doctor said then he would sent a request to the DMV for him to take a Skills Reassessment test and see if they consider still him safe to drive. He passed the written part but failed the road test after 3 attempts. It’s strange though that after the last attempt yesterday they didn’t cancel his license or took it from him, instead they just told him he’d get a letter in the mail, I guess it’d be the formal notice.
Anyway, I know it must be very hard to accept to be dependent on someone else for getting to places where before he would drive himself to the Home Depot at 6am or to Walmart after dinner and stay there until they close at 10pm. He knows I won’t be doing it that way for him, I suggested he plans where and when he wants to go in the week and tell me so I’d try to arrange my schedule to drop him and pick him up. That’s not good enough, he talks about getting on a bike to go places, where we live one has to take a freeway road to get anywhere, can you see an 83 yr old doing that? His bladder control is non existent now, if he forgets to put on the diaper type underwear when we go somewhere is so embarrassing to see the wet spot on his pants. I’m 68, I have tried all my life to keep myself in good shape with exercise and a healthy diet and now I’m supposed to sacrifice what are possibly the last few years I feel healthy enough to do the things I’d like to do, like travel, being his driver and caregiver!!!
Today he even mentioned we could move to a different state so he could still drive!! Total denial about his mental condition!! As long as he has a sliver of lucidity left I know he’ll never accept to move into assisted living and let me have a life.

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@mariana739

Hi,
It’s worse now. The neurologist said he should not be driving, when Richard did not seem to agree with that the doctor said then he would sent a request to the DMV for him to take a Skills Reassessment test and see if they consider still him safe to drive. He passed the written part but failed the road test after 3 attempts. It’s strange though that after the last attempt yesterday they didn’t cancel his license or took it from him, instead they just told him he’d get a letter in the mail, I guess it’d be the formal notice.
Anyway, I know it must be very hard to accept to be dependent on someone else for getting to places where before he would drive himself to the Home Depot at 6am or to Walmart after dinner and stay there until they close at 10pm. He knows I won’t be doing it that way for him, I suggested he plans where and when he wants to go in the week and tell me so I’d try to arrange my schedule to drop him and pick him up. That’s not good enough, he talks about getting on a bike to go places, where we live one has to take a freeway road to get anywhere, can you see an 83 yr old doing that? His bladder control is non existent now, if he forgets to put on the diaper type underwear when we go somewhere is so embarrassing to see the wet spot on his pants. I’m 68, I have tried all my life to keep myself in good shape with exercise and a healthy diet and now I’m supposed to sacrifice what are possibly the last few years I feel healthy enough to do the things I’d like to do, like travel, being his driver and caregiver!!!
Today he even mentioned we could move to a different state so he could still drive!! Total denial about his mental condition!! As long as he has a sliver of lucidity left I know he’ll never accept to move into assisted living and let me have a life.

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I’m so sorry. That’s tough. I would keep in mind that just because the doctor said don’t drive, he may ignore or forget that. And, even if DMV suspends his license, he might not accept it and drive anyway. He might promise otherwise and still drive. So, I’d take elaborate measures to ensure he doesn’t have access. Because, if not licensed, your insurance may not cover damages if he wrecks.

It’s all so much to process. I hope you can get options from an elder/family law attorney.

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@mariana739

Hi,
It’s worse now. The neurologist said he should not be driving, when Richard did not seem to agree with that the doctor said then he would sent a request to the DMV for him to take a Skills Reassessment test and see if they consider still him safe to drive. He passed the written part but failed the road test after 3 attempts. It’s strange though that after the last attempt yesterday they didn’t cancel his license or took it from him, instead they just told him he’d get a letter in the mail, I guess it’d be the formal notice.
Anyway, I know it must be very hard to accept to be dependent on someone else for getting to places where before he would drive himself to the Home Depot at 6am or to Walmart after dinner and stay there until they close at 10pm. He knows I won’t be doing it that way for him, I suggested he plans where and when he wants to go in the week and tell me so I’d try to arrange my schedule to drop him and pick him up. That’s not good enough, he talks about getting on a bike to go places, where we live one has to take a freeway road to get anywhere, can you see an 83 yr old doing that? His bladder control is non existent now, if he forgets to put on the diaper type underwear when we go somewhere is so embarrassing to see the wet spot on his pants. I’m 68, I have tried all my life to keep myself in good shape with exercise and a healthy diet and now I’m supposed to sacrifice what are possibly the last few years I feel healthy enough to do the things I’d like to do, like travel, being his driver and caregiver!!!
Today he even mentioned we could move to a different state so he could still drive!! Total denial about his mental condition!! As long as he has a sliver of lucidity left I know he’ll never accept to move into assisted living and let me have a life.

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As Celia ( @celia16 ) suggests, take him to a family law attorney and have them explain that he (and you) could lose everything if he continues to drive against medical advice.
And lock up those keys (or remove the batteries from his.) We had to do this with my Mom - she was mad at me about it up until a few weeks before she died. In her case it wasn't dementia, it was brain deficits from strokes. We had a professional driving eval that she failed, disabled her car and eventually convinced her to sell it to a relative "who really needed it." But it was my fault because I scheduled and took her to the eval...this happens when reasoning skills diminish.

The second issue , "As long as he has a sliver of lucidity left I know he’ll never accept to move into assisted living and let me have a life" When the time comes and he has a fall, a UTI a "spell" or whatever, have him transported to the ER by ambulance. Once there, enlist the doctor & social worker to move him to appropriate care. It's tough love, but it is sometimes the only way.

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@mariana739

Hi,
It’s worse now. The neurologist said he should not be driving, when Richard did not seem to agree with that the doctor said then he would sent a request to the DMV for him to take a Skills Reassessment test and see if they consider still him safe to drive. He passed the written part but failed the road test after 3 attempts. It’s strange though that after the last attempt yesterday they didn’t cancel his license or took it from him, instead they just told him he’d get a letter in the mail, I guess it’d be the formal notice.
Anyway, I know it must be very hard to accept to be dependent on someone else for getting to places where before he would drive himself to the Home Depot at 6am or to Walmart after dinner and stay there until they close at 10pm. He knows I won’t be doing it that way for him, I suggested he plans where and when he wants to go in the week and tell me so I’d try to arrange my schedule to drop him and pick him up. That’s not good enough, he talks about getting on a bike to go places, where we live one has to take a freeway road to get anywhere, can you see an 83 yr old doing that? His bladder control is non existent now, if he forgets to put on the diaper type underwear when we go somewhere is so embarrassing to see the wet spot on his pants. I’m 68, I have tried all my life to keep myself in good shape with exercise and a healthy diet and now I’m supposed to sacrifice what are possibly the last few years I feel healthy enough to do the things I’d like to do, like travel, being his driver and caregiver!!!
Today he even mentioned we could move to a different state so he could still drive!! Total denial about his mental condition!! As long as he has a sliver of lucidity left I know he’ll never accept to move into assisted living and let me have a life.

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It’s so hard…. I think the same, we have no family only me and lately I am thinking of the few years I may have left and this is not how I planned on using it. I hate myself for being or thinking like this but what is the alternative, my husband gave me 43 years of perfect bliss is it fair when times get rough to walk away, I have to remember this and what it might be like if it was reversed? Sometimes I think I have dementia when I am so overwhelmed I cannot think. I just plod along, we just go everywhere together although I recently started having a massage and I have a treadmill, in the garage which helps I open the door and look out. No one ever blames someone for whichever path they choose and no one has the right to criticize. 😍

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@jeanadair123

It’s so hard…. I think the same, we have no family only me and lately I am thinking of the few years I may have left and this is not how I planned on using it. I hate myself for being or thinking like this but what is the alternative, my husband gave me 43 years of perfect bliss is it fair when times get rough to walk away, I have to remember this and what it might be like if it was reversed? Sometimes I think I have dementia when I am so overwhelmed I cannot think. I just plod along, we just go everywhere together although I recently started having a massage and I have a treadmill, in the garage which helps I open the door and look out. No one ever blames someone for whichever path they choose and no one has the right to criticize. 😍

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I feel bad when you say "my husband gave me 43 years of perfect bliss is it fair when times get rough to walk away" - please do not view it as walking away. Try view it as giving him the best possible physical care by a staff who are not worn out, and emotional care by you provide the "icing on the cake" - sharing memories, bringing him little treats - all while caring for yourself. One thing we always did for my mother-in-law was her laundry, so that her belongings did not disappear or get damaged by the mega-laundry at the facility. Another thing was to go on the days she had her shower, and brush and condition her hair and massage lotion onto her arms and legs - little things that probably get lost in the chaos of day-to-day cares at home.

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I agree about how caregiving continues when the loved one enters a facility. You are still on call 24/7. Many nights I’d get the call and meet the ambulance at the ER. My cousin was afraid of doctors and so she needed a lot of consolation. You still attend doctor’s appointments, manage finances, provide comfort and enrichment items, etc.

People visit according to their own abilities. Often when I visited, I made it a special occasion for my cousin. It started due to her worrying over some matter that she could not articulate. She didn’t know what it was, only she’d cry and ask me how to fix it. Some problem that was in her mind. She did this some, even with medication. Cymbalta helped. It was part of the dementia. I would show up with balloons, flowers, festive tv shirt, and her favorite snacks…..explaining to her that we were celebrating that the matter she was worried about had been resolved! All was well! Things worked out in her favor and a celebration was in order! She was thrilled! We would hug, chat, I’d push her in wheelchair around the facility, enjoying her treats, etc. She loved it and of course each time was like the first for her. In an hour, she had no memory that it happened.

Eventually, she stopped worrying, but I still did the celebrations occasionally. Eventually, those things didn’t interest her. I have pics from the happier days though.

Even with her dementia, she would often tell Memory Care staff and others, like the hairdresser, that she had a good support system! I was amazed she said that. I think she really held on to it. Actually, I was her only support person. My parents visited her a couple times, but that’s it. Just me. It’s good to have back up, but sometimes it’s not possible. When someone gets dementia…..people aren’t as helpful as you’d like. Even family. It can be stressful, exhausting and last for years! Placement is often necessary and isn’t a bad thing, imo.

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@cheryl16

Thank you, jehjeh.
This is so difficult. I wake up some mornings feeling panicky and think I shouldn’t move him now. He tells me he loves me all the time. I know he loves our little dog. But we share meals in silence and have no real conversations the rest of the day. I know he can’t distinguish between love and need, not that it’s an easy distinction to make. I want to believe he will do better in a more stimulating environment, attended to by staff who (hopefully) aren’t burnt out the way I am.
I don’t know how I’ll be when he’s gone and I’m missing him - I know I will still miss this diminished version of him.
BTW- Do read Travels to Unimaginable Lands. It deals with these issues with insight and compassion.
And thanks for your thoughts, and always know I will try to help you in any way I can. xxx

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Thank you for the book recommendation: Travels to Unimaginable Lands. Excellent read with good anecdotes and examples to clarify points. I am reading it quickly and then will go back and read it again to make sure I didn't miss something. I am in the process of placing my husband in Memory Care very soon...just writing those words stabs my heart. I think of it as a six month trial for both of us. Nothing is in stone, but I have to take a break from under the rock I'm living under right now. My husband's ALZ seems to be pushing him into a rapid decline. I don't expect him to know his birth date, but I wasn't prepared for him to forget how to use the toilet and chose a wastepaper basket instead. Friends and family are in total support of moving him to get professional help; however, I still feel overwhelmed with guilt. It is hard to put myself first, but in this case, I really have to do something. The caretaking role isn't sustainable for me. I've experienced instances of aggression that I know can get worse. I had hoped for a level playing field after settling in after a move near our daughter, but it is much more of a downward slide. All I can do is give it a go and hope for the best for both of us. The facility is five minutes from our home, so quick visits done often will be my goal. I want to be a cheery friend visiting..he doesn't recognize me as his wife of 57 years. I really feel like a deer caught in the headlights much of the time. I appreciate having a forum to share our journeys. Somehow it lightens the load knowing that I'm not alone with this struggle. I would like to hear from others who have experienced a successful move for their spouse into a memory care facility. It might make it feel less overwhelming. I've ordered a Hawaiian poster for his room. He might not remember it, but we met on Waikiki Beach in 1964. If nothing else, the poster will make me smile when I visit him

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