New to this site but not new to dementia

Doggie Lover

Mom was diagnosed with dementia in 2018, moved to MC in 2019, and passed in Oct 2022. DH was diagnosed with dementia in April 2023. I am his full-time caregiver, with some help from our son and nearing teenage grandson.

Mom was in stage 2 when COVID shut everything down. When MC finally reopened for visits she was in stage 3 and the staff provided what they determined was her needed care which I didn't always agree with.

I knew this would be hard but I never expected this hard. Along with the dementia he has a pacemaker, congestive heart failure, is on a very low sodium diet and prone to falls.

Issues I am currently dealing with is he bleeds very easily and will pick at scabs and previous bleeds and starts them bleeding again. I have to wash towels and bed linens every few days. The low-sodium diet means I have to cook everything from scratch and feel like I'm cooking all the time. The other issue is he wears Depends because of leakage. Getting him to change the Depends daily can sometimes cause an issue and showering is a major problem. Quite often he begins to smell because I can't get him to take a shower and if I don't watch him closely in the shower he will not use soap to get clean and will still smell. I can't leave him alone because he is prone to falls so no matter where I need to go he goes along. Because of his mobility issues he usually will sit n the car but then complains because I am taking too long to do my errands. We are usually gone about 1 1/2 to 2 hours from leaving the house to getting back home.

I am so open to how others have dealt with similiar issues with their loved one.

Thanks, God Bless and have a great day.

M1

Have you thought about a hospice evaluation? If he has mobility issues, he may qualify, and you have nothing to lose by asking. The parameters are different with a dementia diagnosis, there are folks here whose loved ones have been on hospice for over two years (not the six month timeframe that is used for cancer, for instance). You don’t need a doctor’s order, you can request evaluation yourself.

SSHarkey

It certainly sounds like you’re needing some extra support people! Private pay? Adult Day Care? You need to be able to get a break. Your local council for the aging might give you some direction.

harshedbuzz

Hi and welcome.

I agree you probably need more help than you're getting. If you can afford it, a HHA or day program would give you time to get errands done as well as have some time for your self.

With the combination of CHF and what you are describing as Tam Cumming Stage 6, a call to hospice would be worth trying. One of the services they provide is twice weekly bath aides. You may find he's more cooperative for a professional in this ADL; both dad and my friend's mom were better about hygiene for their aides compared to their family-caregivers.

Tam-Cummings-LLC-Handouts.pdf (tala.org)

HB

Doggie Lover

Thanks for the suggestions. I do appreciate all of you. Yes, I do need to get in contact with our local Senior Services and that has been on my mind to do. Added to my list of things "To get done".

I do know I need to get some help. I did try a posting on Craigslist a couple of months ago for someone to come in on Sunday, starting once or twice a month for about 3 hours so I could go to church, with the right person would lead to more time. I got one response but she didn't drive. To make a long story short I don't think she wanted to work because I offered to pick her up and take her back home since she lived fairly close. Her response was she was too busy at the time getting her house organized. Maybe Senior Services can help me with some caregivers who want to work.

Hospice Care I'm not sure of this right now. DH had cancer on his arm about a year ago which was removed. Spots are showing up on his other arm and some things on his leg. We have a dermatologist appointment mid April so before I make any decisions regarding Hospice I need to wait and see what is going on with this.

I do know one thing we have discussed when he was first diagnosed. We do not want to put him in MC. I was never happy with my mom in MC but that was not a choice. We have a choice with him at least for now.