Losing my patience as another holiday is ruined!
On thanksgiving I miss my mother (dead for along time, now) and other family members who I never get to see anymore & friends who I also don't get to spend time with. DH has already ruined the day with an outburst and my patience is totally gone. I feel completely alone and like crying, but can't because I'm the only caregiver to someone who appreciates nothing and is so, so unpleasant most of the time. Sorry for rant…just can't cope today. Happy Holidays?
Comments
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Sorry, Ella. Better holidays someday.
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I’m sorry you are going through this. I understand missing family. I’m missing mine horribly. Luckily for me my DH at this point in time doesn’t get angry. I pray every day it stays that way. I hope your day improves and you feel better.
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Holidays are hard! It is especially hard when the person you give your all too doesn't seem to appreciate it. Promise yourself that next year you will find a way to have some joy in your life. Hire a caregiver for the day - and to heck with the cost! Go out and volunteer at a homeless shelter, eat with old friends, do something for yourself! I will also be glad when January comes, but in the meantime, please take care of yourself. We all understand! (((HUGS))))
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BaileysMom- we are here and know how you feel!!! I hope you can get a walk in, take in a few deep breaths, cry, and remember how precious you are and that you are loved! Wishing you a better rest of the day!💕
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Thank you all for your comments and support…I would be lost without my friends in this group!❤️ DH has a headache now and has decided he doesn't want any dinner…at least I don't have to cook! I am going to make an effort next year to put some kind of joy back into my life…we all need some to get through this ordeal…
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so sorry you are going through this. As you know it’s the disease, not him. Is he on medication? Anxiety and agitation are common with Alzheimer’s patients. Talk to his doctor. Tam Cummings videos helped me care for my DH. Also the book “The 36 Hour Day” recommended by a nurse. Definitely find a way to take a break for yourself. Maybe someone at church could help? We understand completely what you are going through. This disease is heartbreaking for both the person with the disease and their caregiver. Praying for you both. 🙏
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We sure do!!
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BaileysMom it’s crap it’s horrible when you feel so very alone. My DH doesn’t notice anymore if I’m stressed, tired, at my wits end, lonely or anything else so I’ve given up expecting any comfort or thanks. In fact I don’t think I expect anything from him anymore. I’ve also given up on old friends because most of them have abandoned us but I no longer care and it’s such a relief, no expectation’s from anyone. Quite empowering actually but I have set out to find as many new groups as possible on my terms, they have to include my DH plus our new little schnoodle or I’m not interested. Disability Sailing is one group, painting classes with a couch for my DH and a garden for our puppy, is another, a Government Carers group which my DH won’t join in with but they do have friends & partners dinners so we have joined in with that. He is often objectionable and I have to encourage and lie. It’s not easy but it’s keeping me sane I think! Off with the old, plod on with the new. It’s exhausting but don’t give up, i have found myself walking, oh so slowly behind my DH making faces and silent, very strong adjectives in frustration, ha ha, then thinking how childish of me. Take care, rant and rave and cry when necessary and know how valuable you are and that we care.
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Virtual hug to all
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Biggles…Our situation sounds so similar…unfortunately for both of us! My DH never thinks that I might not feel well, or be tired or anything that you have mentioned…I know it's the disease, but he has always pretty much been this way. I also have gotten to the point of expecting nothing from him & say really vile things under my breath at times when I can't take it anymore. I have an appt with a medicaid atty in about a week…have to tell him that it's free and I only have an hour so it would be more productive if I go alone or he would have a total fit. Can't telI him until the day before or he will make it so complicated that I'll have to cancel. I won't go anywhere anymore either if I can't take DH and my little dog…too stressful and not safe to leave them alone now. Only people involved in a similar situation can understand, so old friends are falling by the wayside. I live in an area with very few, if any, programs for dementia available so am very isolated…DH would probably not want to be involved anyway, and would not be happy if I participated. On and on…thank goodness for this site!
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I'm very sorry. Every day is a new day. I've found if I can get out at least once a week for a couple of hours it helps me refresh. I understand this can be easier said than done, but important for each of us.
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I agree that it is very important to have some time away, but haven't been able to work it out yet. If I go, I don't enjoy it because I'm so stressed, and if I don't go I feel stressed because I never get away! If I take DH with me it is even worse, so that doesn't usually work well. Part of my new years resolution is to make some time for myself. Thanks for your reply.
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I have done the face making so many times! Every time I read about someone else doing it, it makes me laugh out loud. Yes, it is childish of us, but it also relieves some of the tension without saying something out loud to cause an argument. So I say to all of our fellow face makers … keep the “face making” in our arsenal of coping mechanisms. It’s harmless!
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Ha…that is funny! I thought I was the only one too, and that I was a selfish and horrid caregiver. Not a job any of us asked for and most of us are not equipped for?
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I am more of an eye roller behind my DWs back. Haha.
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My DH who is stage 6/7 and whispers only, and not very much anymore, was listening to me last night. Well, i never know if what I say registers these days . But I still talk to him all the time, just like before. It’s as much for me as it is for him. He does understand “I love you” and will often put his hand on my arm or leg when I say it. Last night I was telling him that the turkey and what was left of Thanksgiving was all gone now and he wouldn’t have to eat the leftovers anymore. He looked at me,rolled his eyes (unusual) and made a flipping motion with his hand, like thank goodness! I guess he does understand more than I sometimes think. Your posts about the eye rolling reminded me.
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I am so sorry for your ruined holiday, but, friend, I am kinda happy to read it. I am brand spanking new to this and my DH refuses to get diagnosed or in any way accept. (One doc visit and he was furious and returned to his fury several times in the weeks following.) This was our first family Thanksgiving and he was pretty good with the family, but upon our return to the place (my son's) we were staying he was suddenly furious with me and like the newby I am as soon as he stormed off to bed I burst into tears. I am not glad for either of us, but it does help to know that I am not alone.6
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That is one of the best things about this group…no matter what we go through, others are having the same experience. Glad that your DH was ok with the family dinner…I don't think I would even risk that kind of adventure!
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That's very sweet…I'm sure you're talking to him is comforting even when he doesn't respond.
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Various health workers keep telling me I need time away, but same as you I haven't been able to do it. I had a home carer for 2 hours a week so I could go out but I felt awful didn't know where to go and my DH wasn't happy being left so now I pick places that suit us both. We used to sail so we walk slowly down at the Marina and get a dose of fresh air and sunshine; shopping centers are out too busy and complicated, I take coffee with us; we also have a couple of special stops for milkshakes that my DH loves. It all helps, we have a couple of different places for takeaway fish & chips, and sometimes souchi in the park taking time over lunch is great and helps us use up the day and is very calming for him and me. I like to find something to take us out of the house each day. I have also found Vineys or any large secondhand shop great because they are understanding and my DH can have whatever he wants (which doesn't happen much these days his interest in most things is gone) but I find books and maybe a CD or two for our old CD player. The latest is Christmas carols played over and over. We sometimes even have a little dance in the kitchen to these. Oh gosh, it's hard it brings back memories and I cry.
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It is hard. Going through much the same. Please step back and think about how your loved one is not acting this way on purpose. It's the damn disease. They can't change but caregivers can. I might suggest Careblazers.com for insights into the minds of our loved ones and ourselves. Best wishes. There can be Joy. Earl in Hartland
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Thanks for your comment…I am trying to be more patient and am learning as I go along…like all of us, I guess. It's hard, though, when you are vilified because you won't buy a big sailboat, sail to Puerto Rico, buy a house there and live happily ever after! Instead I am meeting with eldercare attys and trying to figure out how he will manage when I am gone…not my dream life, for sure.
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Biggles, Your post hit home with me…I am looking for a special place to live for our remaining last few years. DH loves boats more than anything, so being able to walk around a marina would be ideal. He still wants to buy a liveaboard sailboat and cruise off into the sunset (which obviously is not a good option), but living near a marina might help. Problem is that we have lived in Florida for years so want to be where it is warm…haven't been able to find a place that is affordable enough, and not too overcrowded…looking though!
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I found your post as I was also looking for ideas on being more PATIENT! My DH has been more confused the past few days. We're in MCI (early stages, for sure), but I realized that Christmas 2023 was one of our first incidents of him being mad at me for something he thought I said, when it was absolutely not said. I'm seeing more of this in him… "you said you have to make all the decisions!" or "you said that I never do anything right!", when those statements have never come out of my mouth. I think he feeling these things and imagining that I've said them.
The last week has been more of a struggle as he has been diagnosed with some food allergies and has a list of foods to avoid. He also has new vitamin supplements to take, and these two changes have seemed to really throw him. We've gotten into shouting matches the last two nights because he is frustrated with having to take more medicine, and by the end of the day we're both out of patience.
Last night, we both apologized before bed and he finally admitted to me that he feels depressed and wishes "I could just be me again." (speaking of himself).
I've read another post about counseling. It sounds like I'd be better off going alone than hoping he will get anything out of it. I know this is hard for him. I can only imagine how sad, frustrated, scared, and out of control he must feel. However, I've quit my job so I can stay home and cook, clean, and make sure I can go with him to every appointment he has.
Sorry for the venting… but I can see I'm not alone here.
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Greenolive, someone above mentioned Careblazers, and I do recommend them to help with patience. She is not about how to hold tighter, but rather about how to change your thinking to decrease the struggle. Don't get me wrong, the struggle is still there, but it seems easier to cope with.
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l am so sorry to hear your Thanksgiving was ruined! My DH and I spent Thanksgiving along this year and it was wonderful. He was diagnosed with vascular dementia during COVID and I am just coming out my denial phase. Fully accepting it is still too difficult for me; but we had the most wonderful Holiday dinner. But as evening progressed he became confused. But I try to look for the good times.
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Our boating enthusiasts are quite incredible. We had the most wonderful life on and off the water and it's so very hard now to come to terms with no boat! No life! And yes my DH still wants to buy a yacht, yikes! but you know I don't think that special place to live is anywhere because we take our troubles with us, and our troubles are so very big, so be careful what you decide to do. Could be a lot of work and no true gain. Oh dear what a mess this thing is. I am so sorry.
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Vent and post as often as you can, it hurts no one and I find its really helpful for me. Discussing things with your OH also doesn't work because their analysing and thinking brain has gone wrong. You have to think for them, looking interested but ignoring whatever they are saying, smiling and not looking cross or annoyed works a treat for me too and then deciding what to do without all the discussion, it's too confusing and information overload for them. Good luck - this is awful.
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Greenolive, I've gotten used to being blamed for things I haven't and wouldn't dream of saying…he has been doing this for years, actually. Lately he has been having meltdowns during dinner, so that is totally ruined. Last night he decided that our marriage was over (57 yrs) because we're not on the same page anymore and I keep sneaking off to my studio to paint (I am an artist and now get to 'sneak away' for about an hour per week) and I would rather be with my friends (true enough), and then brings up everything that I have done to harm him for the last 50 yrs. He was going to leave and live on a sailboat, but knows that he can't do it without me and I refuse. Finally he said he wanted a beer for dinner (we hardly ever drink, but did have a couple in the refrig) so that's what we did. After that he decided that he was doing "too much thinking and not enough drinking". I get the "you're always right, we have to do everything you say, blah, blah, blah" remarks too. It happens every day, so I don't expect anything else now and just agree to everything. Even though "it's just the disease" talking, I sometimes think…what about me? (I did feed him some dinner eventually). Keep venting…it helps all of us.
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Biggles, I was worried that I post and vent too much…but it does help, and I benefit so much from reading others posts too, so will keep doing it. You are right about taking your troubles with you. We have had to move about every 5 years because DH gets bored and moving is the only thing that distracts him for awhile…he never has had anything from within that fulfills him (which is why he resents my being an artist)…needs constant change and external stimulation. We currently don't have a real house, though, moved into a mfg home in a 'fish camp' on a lake that was going to be temporary while we looked for a house…been here 6 yrs now! He has never been happy, is a complete codependent, and won't be happy if we move, because where we live is not his real problem (other than alz)…having no meaning in his life is it. I think I'd like to have one last, nice home, though, It will be lots of work…I will have to do most all of it…and may not be worth it in the end…so don't know if it will ever happen.
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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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