Not liking me or DH much these days
It’s very apparent to me that everything and I mean everything my DH does or doesn’t do these days annoys the heck out of me! Trying to get him to shower or change his clothes or eat a decent meal (and not sweets) is always a battle. I take him out everyday and no matter what we do he complains about something. If I leave him home he complains about that and proceeds to call our children wanting his truck back. He called one daughter 5 times, her husband twice, their son 3 times! On to daughter 2 which he called 14 times consecutively and then my son 7 times!
I can’t stand the way he looks, smells, behaves! I’m tired I’m tired of being nice, understanding, the distraction expert , the newly crowned fiblet queen, the pleasant encouraging person only to get yelled at it’s exhausting! I know I need a break which I get when I take him to adult care 2x a week. He doesn’t like it and calls me several times while he’s there but it’s my only break. It’s heaven - my stomach doesn’t hurt, my head doesn’t hurt but I am exhausted and just want to crawl into bed on those days. Tell me how do you cope, how do you keep going, how do you have a day where you don’t cry? Tks for your advice
Comments
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I'm sorry you have to go through that. Not that medications are always the answer but there are medications for agitation and anxiety. Is your DH seeing a neurologist?
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I'm so sorry you are going through this. I can commiserate with you about the exaustion. It's so hard when you try to do everything the way you think you're supposed to, sometimes I want to throw up my hands and say "I'm outta here". When I get that way, I try really hard to recircle, take a breath and start over again. It doesn't always work, sometimes I just hide away in another room, cry just to get a release and then start again. Know that the people on these message boards totally understand your feelings. I don't have a solution for those times when you feel like you hit the wall, I hope to keep learning as time goes on and reach out to these boards when I'm at the end of my rope.
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I’m so sorry you are going thru this !!! Yes you must get him onto some med to calm him down, for your sake.
YOUR health is the most important at this point. And as the disease progresses he won’t be able to use his phone to call/annoy family members (this eventually happened with my husband).2 -
Is placing him in a MCF possible?
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Your exhaustion description is spot on and describes caregiver overload. All I can offer is understanding and caring. I have no idea how this is done day after day, year after year. But I am going into year three and still standing.
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Can you bring in a caregiver to help him shower and make him a meal? This could be a few hours a day several days a week to give you a break. Maybe he would be more responsive to another person and not argue. I would talk to his neurologist about medication. You have to take care of yourself before you can take care of him. Come back here for support.
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In agree that you have to take care of yourself before you can take care of him, but I also know how hard that is because you do care about and for him and a loving commitment is to put the other one first. To put them first you have to be there, and the only way you can be there through this is to get some rest, get a break and take care of yourself. I think even though it is hard to do and we don't always do it that it is taking care of them by taking time for yourself so you can deal with the issues that keep coming up. It is a hard long journey.
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It’s a long hard journey indeed. I remember a period a few years ago where I thought my DH was going to drive me crazy. He was yelling all night long, every hour, every 20 minutes, every whenever. It was beyond horrible. Now I think back to how mad I was with him during that time and it makes me sad. I didn’t know any better what was going on. I acted in ways I can’t take back. Yelling, having a fit, crying. His neurologist suggested Seroquel, and shortly after that, Zoloft. Those two pills helped both of us and helped me be a better caregiver. Now the house is relatively quiet and he is easier to care for. But he’s also hardly present as he’s sleeping 18 + hrs a day. I almost want to go back to the crazier days so I have more time with him. It’s heartbreaking. It kills me to see him go like this, he was such a wonderful man.
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I don't think you should live this way! The stress will sicken or kill you. Ideas: Try getting him on medication as others have suggested. Hire someone to help you and give you a break. Put him in an MCF for respite, and if it works out for you, place him.
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Dear JC5, first of all, a big hug sent to you. I know this is hard. This is probably the hardest thing you will ever have to do. Being a caregiver takes a toll on us physically, mentally, and emotionally. Is there some way you could get a few days off? It sounds like a little respite care might be helpful for you. And medication. Is your DH on any medication for anxiety? If not, you might want to talk to his doctor about adding some. It can be a big help. Have you called your Area Agency on Aging? They might be able to offer you some respite hours and also a shower aide. I know the shower aide was so helpful. He would take a shower for her when he wouldn't for me. Have you read the 36 Hour Day book? If not, it can be very helpful. About his wanting to eat sweets. That seems to go with the disease. You could try adding a little touch of sweet to his mashed potatoes or give him graham crackers with peanut butter. Sometimes finger foods work well as they can pick them up and they are easy to eat. Last of all, please take care of yourself as best you can. You are important too. Rest when you can and try to find some joy in each day. Come to this forum often for support. Here's another big hug to start your day.
Brenda
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Oh, honey. Big, big hug to you.
There are so many times I felt like I was losing my mind on this terrible journey. I think I cried every day for the last 4 years and never felt calm or comfortable from Stage 4 to the end.
The only way I was able to continue to care for my DW was through two things; 1) medications for us both and 2) overnight respite for me. I was incredibly lucky to have her sister agree to come and spend the night with her now and again and I would meet a friend somewhere for a couple of days or just go by myself. That worked well enough for years until we got closer to the end and there was not much that made me feel better, except for the help from hospice.
I wish I would have called hospice sooner. I had in my head "6 months to live" and couldn't imagine that was all the time my DW had left. But, I became so exasperated by her increasing wandering, chattering and an inability to get the right med mix, I called out of sheer desperation. They accepted her because of her significant weight loss, the wandering, inability to take care of herself and failure to thrive. They literally said nothing about how long she had to live. I don't think it would hurt you to give them a call. It's all paid for by Medicare and they will come for an assessment very quickly. They provide the kind of support and care that we dream health care could be.
Hang in there!
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From what I have been told hospice is treated differently for dementia because for most diseases they are treating the disease trying to cure it but with dementia having no treatment available the six month thing is not treated the same. My wife has been on hospice for over 6 months and her physical condition did improve after getting on hospice, I think because they made some medication changes, but there has been no talk of her what they call "graduating" off hospice. I was told that "graduating" does sometimes happen, but they can be reassessed and get back on when things change again. My wife is in MC but hospice has still been a great help.
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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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