I am going through a very difficult time in my family. My husband was diagnosed with Esophageal cancer last November, he is also suffering from dementia, in addition he felt at home broke his hip and underwent hip surgery a month ago and is in the process of rehabilitation .
As you can imagine this is too much to handle for me by myself My son lives in the area but he works to support his two babies and wife, he gets in touch with me and offers his support whenever he can.
I decided to hire a caregiver to make my life easier. She is a good hardworking woman who does her best to help my husband but he is rude, and nasty with her , he gets mad and furious . He wants me to do everything for him.
I am so irritated, tired, and frustrated . Money is tight for me but I am paying a caregiver which is expensive just to get some help but he does not cooperate .
I am so sorry you are dealing with all of this. I am glad you were able to get help. Caring for our loved ones with one of those issues is difficult. I cared for my mother when she broke a hip and had lung cancer and I had was caring for her with my brother. It was still exhausting. I don't know if this is even possible, but maybe a male nurse might be a better choice? Maybe he would be more comfortable with a male helping than a female.
is the same way. We finally had the "either cooperate, or you're moving to a nursing facility" talk with her. She doesn't have dementia, though. I know it probably seems crass, but most people CAN'T take on the total care of a spouse or parent due to full time jobs, etc. We couldn't.
If your home carer is allowed, can she help with the laundry, cooking, dishes, cleaning, etc. and let you take care of your DH, and then just assist when you need it/can't move him, etc? We did that for a while, too, until it became untenable.
Whatever you choose, I know it's going to be a tough decision. I hope you get a answer that will allow you some rest and peace.
I hope that your provider adequately understands that a patient with dementia isn't going to understand and react necessarily how a rational person can. You need to understand that, too. I was fortunate that my mom (who recently passed and suffered dementia) was normally easy going- but I can tell you there were several times that I witnessed (and many more that my dad witnessed) where she was totally not okay. She said some really ugly things that I know she would be completely embarrassed and ashamed of- but it was not her talking. It was the dementia. I was and still am amazed at how compassionate, kind, and caring my dad remained every time. I don't know if I could have done the same.
Do you leave sometimes while the caretaker is there? If you don't, you should start. It will be a big break for you and maybe allow your dh to allow the caretaker to do things she might not otherwise be "allowed" to do.
If you haven't reached out to a support group, do so. It might be a big benefit for you.
I’m so sorry to hear it. We had the same issue with my dad…we eventually could not help him and got adult protective services involved - they were very helpful. It sadly ended up with him needing to go to a nursing home. If you are of a certain age, see if Medicare can help…it sure did for dad
Lots of prayers and hugs…
When my mom needed a caregiver we convinced her that the caregivers were friends who were stopping by to see her. Luckily it worked. She saves her nastiness for family.
Can you use the caregiver for meal prep, laundry, and cleaning until he is more used to her being around?
We had to have the “you don’t get to be a d!ck just because you’re sick” talk with my EX-FIL. He was nasty to everybody who tried to help him. He did get better, but he needed some reminders here and there.
We are very fortunate in that my parents, who both had/have dementia, had the financial means for help. My dad had a slow 15 year journey with the illness and my mom lived with him and cared for him solely for the first 8 years, and most of it until year 14. (I'll describe the help she had below.) I would have liked to have seen him moved into dementia care earlier as it was very hard on her. We went through various ways of getting her help during the last six or so years of his life.
1) a caregiver company (we used Home Instead.) They were great and we could hire as many hours as mom would allow, but mom didn't get much relief from them because she still wanted to do everything herself. She wanted control and kept firing them so that option really didn't work for us. It sounds like this might be the perfect place for you to start if you can find someone.
2) Moved into a senior residence apartment. This was helpful in that mom didn't have to cook or clean, but she still did most of his care herself, by her own choice. (and his demand! - part of his dementia profile.)
3) Assisted living apartment in the same complex when she needed more help with him and was starting to need help herself. This was better in that she got more help with him, but she was still there and he wanted her to do everything.
4) Dad in memory care, mom in assisted living apartment across the parking lot. This was finally the appropriate amount of care. Mom could spend most of the day with him, but leave when it was time for showering, bedtime,etc. She could get a full night's sleep without being at his beck and call. This was not an easy change for either of them, but honestly dad had more happy moments there than in the last previous few years where he had been so isolated.
5) During Covid mom moved into memory care with him. They had empty rooms and she had an early dementia diagnosis. Both were declining due to not being able to see each other. This was a VERY expensive option but a way she could continue to see him regularly and honestly the best case scenario for them during Covid.
6) Now dad has passed and mom is further into her own dementia journey. She is in memory care 3 minutes down the road from me and I visit her daily. She is selective about what activities she participates in but does daily exercise class, weekly scenic drives, outdoor strolls, and goes to music concerts. There are several other ladies that are still quite "with it" that she is friends with. Again, more daily moments of happiness than I've seen in years. "Nursing homes" are what people think of, but there are many levels of care prior to that.
Not everyone wants their parent to leave their home, but it is what my parents had said they wanted (before dementia actually entered the picture, not so much when it came time to actually do it) and they could afford it. My point is, don't be scared or feel judged about looking into options if that is something you are interested in. I have told my husband already it is what I want for us if I have dementia issues. He can find an appropriate placement for me - possibly right down the street where my mom is now - and he can visit me regularly. (I am older than him and obviously have a family history now of dementia.)
I'm glad we went through every level so we never had to feel like we didn't exhaust every option before moving to the next, but we did move mom right into memory care when we moved her near me so we didn't have to go through all the moves again with her.
My uncle was in an adult senior group home (I think there were 4 senior residents?) and that worked well for him. They actually took them on family outings and even camping! (family members could join)
Three weeks after I retired, when he was 67, my husband fell apart. He was diagnosed with cancer and severe dementia. He no longer recognized me, our kids, his siblings…. The doctors recommended home hospice. I was his caregiver. It was the hardest job I’ve ever had. I had help from the hospice team and Medicare. Like you, I paid for a caregiver for 3 hours daily so I could walk (alone or with friends) and run errands. It was expensive, but I figured it out. I agree with Kahlua that you need to leave. I gave the hired caregiver basic instructions (activities DH might enjoy, food he might try, etc) and left them to work it out. It was all I could do to manage the other 21 hours of the day. I look back now and am amazed I had the strength to do it, but it was done with love. Keep remembering your love—that helped me.
Who are pros let all that go. Your husband probably is unaware that his behavior bothers you. My Dad was with it mentally but still it took time for him to accept a hired person. If he didn't like one we would get someone else.
You must get respite and days off, even a weekend away.
I'm sorry your husband is suffering. All you can do is lessen both his and yours.
Some places send a volunteer, but they don't do any nursing. Good to have someone to offer water or a snack or to dial 911.
Just want to say to go easy on yourself. You’re doing your best and give yourself credit. Try to get out on your own for a walk or just sit on a bench in a park. You are strong! Hugs!
Thanks so much to each of you for your great support, the extraordinary advice and guidance that I received in this challenging time that my family and I are going through with the fragil health of my husband. I really treasure it each and all of your responses. I send my love and blessing to all of you.
I am so sorry that you have all this to deal with. My DH has dementia, and it's not pretty. He wanted only me around. Since we're both relatively young (he was diagnosed at 51, now 58) it was worse because I had to work. We went through family, friends and hired caregivers helping. I finally had to place him last March.
Since you're also dealing with cancer, do you have a social worker assigned to you? I only found out just before I placed DH that I should have had one. It was too late for me to get much help, but it seems like you should be able to get some help. Call your doctor's office and ask, if you don't have one.
You can also call the Alzheimer's Association help line 1.800.272.3900 and talk to a trained specialist. Your DH doesn't have to have Alzheimer's, they help with any dementia diagnosis. I have called twice just to have someone to talk to and help get me back on track with my next steps. There may be a local office to you that can help, too. Lots of free resources there. You can even just call and say you need someone to listen... and they do.
And last, you can go to alzconnected.org and join the message boards there. Again, lots of people going through similar problems. I'm a member of the spouse board, and it's a great support group.
So sorry you are dealing with all of this! The main thing that stood out to me was you stating he had dementia. The last couple of years my dad was alive, he had dementia, and he acted exactly as you described. When loved ones get to this point, there's no reasoning with them. I'd talk to his doctor(s) and look up national organization for dementia as well to see if either can give suggestions/help. Good luck and God bless.
My heart goes out to you. I have experience with this in my family. We took care of my dad with alzheimer's in the family home. This was the hardest thing we ever had to do. He would often kick one of us out of the house because he didn't recognize us. We had to sneak caregivers into the home after dark to stay the night so we could get some rest. We finally found a medication to give him. We snuck it into the pudding that he loved. My heart goes out to you as you travel this journey. (((pelusa113)))
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06-27-2022, 03:20 PM
