New to Forum

[clancytwo]

Hi everyone,
I have been reading this forum for some time since my husband was diagnosed with dementia. I decided it is time for me to register and have the opportunity to post.
I am a 24/7 caregiver with no regular assistance. My husband was diagnosed two years ago but I have watched his symptoms progress for at least 5 years.
He is 79 and I am 20 years younger. We live in an underserved area of the state with few services for demenita patients. He cannot be left alone at any time. He is lost in our home, cannot find the restroom, answer the phone, unlock a door/open a door without difficulty, or dress himself. He can feed himself and can control bodily functions so far with only occasional accidents. He hallucinates, sees people, animals, cars and talks to them, when awake. The prescribed drug for hallucinations made the symptoms worse, so he was taken off of it. Fortunately, he is kind, loving, non-aggressive...so far.
He sleeps days and rambles at night. I adjust my schedule to his. I have difficulty going the the market with him so I shop in quanity when I get a chance to get out. Last spring, he wandered off twice and was located by the sheriff's dept. in a wooded area near our home. I am not ready to put him into a residence since he does have some lucid "moments". I have discoved a respite care facility nearby which I will be using in the future and have been looking for an occasional sitter.
I know your situations are similar.
I have been a family caregiver for cancer patients but not this disease.
It is so difficult to watch highly intelligent loved ones disappear before your eyes yet physically remain.

[Choquis]

[QUOTE=clancytwo]Hi everyone,
Hi Clancy!
It is so hard to be the only caregiver. Years ago there was a book entitled "36 Hour Day" and I'm sure you can relate to that. I helped my dad care for my mother. Our houses were back to back so it was very easy to go house to house. I was teaching at the time so I wasn't gone very long during the day. My dad had a hardware store so my mom would go with him to work. She'd stand all day. Sometimes she would dust the shelves, but mostly just stand. They lived 2 blocks from the store. So they'd walk home for lunch, then when my youngest got out of school, they would walk home together. Grandson would "babysit" with Grandma until I got there for about 1/2 hour. It would give my dad a break. I would fix all of us dinner...Then start over the next day!

The respite thing is such a good idea as you will exhaust yourself! My mom didn't know night from day and would tap my dad's shoulder all night. She was afraid he wouldn't open the store in time. Finally, I told my dad that altho I was 30 yrs. younger than him.... I WAS EXHAUSTED!!!! We had to do something. That's when we found a lovely place for her.

Welcome aboard...This is a great stress releaser!


Choquis

[LuvMyLilDoggie]

Hello Clancytwo! So sorry you and your dear husband have to experience this awful disease but I'm really glad you decided to post.

You're right. It is difficult to watch our loved ones slowly lose themselves to this monster called dementia.

I've found much solace in this board and the people here. They understand as only dementia caregiver's can.

It sounds like you're taking the right steps. I know that 24/7 caregiving is exausting both physically and emotionally. Please take time to take care of yourself. Have a friend or family member cone over to visit with your husband while you take a relaxing bath or go shopping or anything you like to do but haven't done in a while.

Come back and chat anytime you like. This is a great website.

Take care!

Love, Barb

[Martha H]

Dear Clancy,

Welcome! I was about your age when I began caring for my Mom .. it was hard, and by the end (with her in stage 5) it became impossible. She is now in a nursing hme and very content there. The time comes when you have to think of yourself.

You sound like a great caregiver. Good luck to you, and God bless you.

Love,

Martha

[needtoescape]

Hi Clancy,
I'm glad you're looking for a sitter to get some relief for yourself. Please don't ignore your own health. Lots of members here have stories about how they did... When I was a student working on a masters in social work (didn't finish), I did relief sitting for a husband whose wife had AD. It was about 3 hours once/week. She was not aggressive or combative. Do you have any colleges or seminaries in your area? They might be a good place to post a notice about a job. Also, would any of the mini-home type of residences take an extra person for the day? Maybe the one you will use in the future might consider that? You have my prayers for you and your husband. N2E