He is physically very healthy, 78 years old and has been placed on vitamin B1 and Aricept 5 mg, to increase to 10 mg in a couple of weeks. He is better at times than others. I am only beginning how to learn to be a caregiver until is very overwhelming right now as I wonder about so many things, mainly who is suffering worse, hi or me? Thanks
I am finding this new role confusing as I don't know if I am handling it correctly, but the warning of self-care for the caregiver is something I do want to keep in mind, not selfishly, but to be able to handle things as they occur.
We had a nightmare of an experience that brought us to the hospital and getting the diagnosis...one that I never want to repeat again...so I need to learn all I can to be the caregiver I need to be. Enough rambling, but it is a blessing to have a place to ramble right now!
While there are many challenges, keep in mind that certain things that are so difficult, often change and give you a break. Constant pacing can be very frustrating for the family, but later they stop doing that. The downside is they may no longer be able to walk.
While there are stages, things can change fast. I would follow the advice above and make plans now. There is no shame in needing help. Even placement is very common. To me, dementia is not so much about someone forgetting things. It's more about unusual and often destructive behavior that is difficult to control. It's also about physical inabilities that require much physical strength to assist the person.
I look forward to seeing you on these boards. Good luck.
If you find yourself wondering that on any particular topic, there's a reason.
Is it too soon to get help at home for ADLs?
Is it too soon to use a daycare/club?
Is it too soon to use a night sitting service?
Is it too soon to talk to the doctor about sleep/insomnia problems?
Is it too soon to treat anxiety and behavioral disorders?
Is it too soon for me to run away and hide under a mountain for a week?
Is it too soon for me to be this exhausted and stressed out?
The fact the question has popped up for you means that it's not too soon and it probably won't be much longer before "too soon" turns into "long overdue".
A lot of very brave and strong caregivers have deluded themselves about reality with the "oh it's got to be too soon for ___". If you feel that way, it's normal. We all do it. But don't get stuck there and end up with a crisis on your hands that forces changes without choices.
I read frequently about attending this support group, that support group, etc. My husband screams and shrieks when I leave to go grocery shopping. How does one attend these suggested support groups? Do they leave their Alzheimer suffering spouse home alone? Or does the support group facility provide adult sitting service while caregivers attends seminars and discussion groups? Honestly, I have no idea how I could do this and yet, after 9 years of sole caregiving...I need the support. Also, this week I checked on local facilities as to whether there is short term respite offered. Mostly for information. Every facility I called are not only filled to capacity but has a long wait list! And the minimum stay is 2 weeks for a patient. So...if anyone reading this is looking for an assisted living facility to provide care for a dementia patient while going on vacation...it is nearly impossible. Don't know what people do without an extended family. I'm sunk. Doctor suggested having a caregiver come in once a week to give me a break. Husband said he would spit and throw anyone out that tries coming into our house. Doctor gave up trying to reason and rationalize with husband. And, I must be careful having a weak heart and acid reflux flare-up, etc. So, back to these support facilities...how do all these caregivers attend? Thank you for any suggestions and answers.
The easiest way is to email the alz.org and ask them whether they gave support group online or by tele-Conferencing. Another way is to email them using their contact us link and ask them questions concerning your love one's condition. I emailed the theaftd organizational website asking them questions on medication and support groups on how to handle my mother-in-law who had frontal temporal dementia. They responded within 3 days with a very detail answer as well as provided me with information on how to join their teleconferencing user group.
I just enlisted in a Telephone conference support group for FTD. There are so many of us that I am on the waiting list. The way it works is the group meets once a month on telephone for 1 to 1 1/2 hour. There are 12 participants and a facilitator. The participants share their experience and ask questions on how they can better care their love one.
I think this may alleviate your concern of leaving your husband alone in the house.
You are going to have to take steps, regardless of what your husband says he will do. My mother threatened to run around naked, pee on the floor, spit, hit, fight. She actually did some of these things, but it was in a facility, not my home thankfully.
You MUST understand that you have to look out for you first, so you are able to be a good caregiver to him. This is not selfishness, it's coping.
You need an in-home assessment to define what your needs are now, and to plan ahead. The doctor is talking out of his hat by saying one day a week. He has no idea what you are really doing. Some older doctors just assume the little woman is going to suck up this effort and it's our job to bear it with a smile.
I say "manure" to that.
Call your area agency on aging. Request an in-home assessment for services. You will need night care so you can sleep. You will need help moving him around and bathing him. If not today, it will be soon so get the train moving.
This is a marathon, not a sprint, so take help, conserve your energy for the long haul, and don't be shy to do what must be done.