Introductions: Are you caring for someone with dementia?

@tsoy Oh my gosh! Thank you so much for the leads!

Fibbing can be helpful depending on stage. EXample; Your car is in the shop. The people in the house are helping me prepare it to paint, carpet. Etc.....you might have a friend that needs to stay with you until repairs are made on her flooded house and she is repaying you and your loved ones generosity by helping around the house. And you will be glad when she can go back home too. But now she needs our help. There is no end to helpful fibbing even though it might be only useful short term, even moments. When wanting to eat too often you might try dinner is in the oven, or you are waiting for the pizza man to deliver. My mom would brush cob webs from the house if I began to and asked her to take over for me while I had to tend to something else. Raking leaves is harmless too if secure from street. She would sometimes stay busy with it for awhile, giving her a bit of exercise. Music on a radio while outside may help them feel more connected to surroundings. When possible pick up lunch to go and save to heat up for dinner as lunch is much cheaper.Pastas, Thai, Chinese food reheat well. This will take some pressure off of caregiver and give some variety to all. I always agree and never say don't you remember? I'll see what I can do might interrupt the thought they are stuck on. This is a long, slow slog with few signposts. What works today probably won't work long.
Aside from this I just learned that depending on what state you live in, should you reach a point you need to have loved one move to care facility although after spending down to qualify the gov can recover what it spent on their care from estate after death. This started in 2009 I believe and is a change from how it used to be handled. Hope this helps@@

I am dealing with caregiving for my husband who has Parkinson's and dementia. I had the same problems with caregivers when I was hospitalized due to a heart attach. The people the agency sent (I was arranging for care for him from the hospital as we have no family in the area). They sent young, inexperienced people who would bring my husband to visit me for ten minutes and then when they left tell him they had to take them out to dinner and buy them cologne. Like you, my church was of no help. I finally found one caregiver who was great but after about six weeks she decided she didn't want to do that anymore. My husband is now in a skilled nursing facility after an unexpected hospitalization in a town 500 miles from where we live. I wish you the best of luck but if you find a way to find a good in home care giver, please share it. I'm scared, alone and at my wits end because I want my hubby at home where I can make sure he is cared for.

@tntredhead. Oh my gosh! How awful, and how scary! I'm so sorry about your circumstances, and hope you are able to move your husband back home soon.

I have not yet been able to begin to check on in-home care. My husband has had out-of-town medical appointments scheduled for yesterday and today, and that has taken up the day yesterday, and will today, too. I will try to share whatever I learn when I do learn anything. I'm saving my questions for the VA, until his next appointment, late next month, but may begin to look around locally yet this week. There's just so much to do every day. It's constant. But, I will share whatever and whenever I am able.

Hi @tntredhead! Good to get to e-know you here. I wish you the best with your husband, his care, and your care too! You are indeed plowing a tough row right now!

It makes me sad (and angry) to read the fact others have had, or are having, some of the same experiences my wife and I did with her caregivers. I believe someone is selling a very faulty business model for caregiving 'companies'! Someday I should sit in on one of their sales pitches and see how much they emphasize the need to be providing crucial services for families in need of a crucial service and how much they are selling profit potential!

If you have a hospice organization in your hometown, or one that serves your hometown, perhaps they might have some suggestions of aides or CNAs who are available for work. Or ours at least had a comprehensive list of service providers.

Peace and strength!

@macbeth -- it might be worthwhile to at least do a bit of a review of some of the local agencies. Checking the BBB ratings, etc. when it is not crunch time.

Peace

Thank you so much. I am glad to have a response.

Hi, It is amazing how Dr's are isn't it. Marcel's dr, didn't start him on any meds either so he decided to sign himself into a dementia ward, he was there three weeks but when he came out he is on some good meds which has helped him so much and thus have helped me too. We have never been around anyone with dementia and sometimes I feel like I am in a little boat in the middle of an ocean and I don't know what to do. His daughter is wonderful and I don't know what I would do without her. Your idea about your wife worrying about what the dr might tell you is a god one. I am going to try to find out if something like that is going on with him. I will let you know. Thank you

@nanax2 how do you deal, cope with your bedridden Mom? My Mom can still walk with someone holding her hands and walking backwards in front of her, well she really scuffles her feet slowly. Her gait is VERY slow and her balance is very BAD. I worry I will not be able to handle her at home anymore by myself when she is no longer able to walk at all. I mean How would I get her out of bed to bathroom to living room and back again? Will she have to remain in bed all the time? How can one person change her? Got any pointers?

Thanks and hang in there

Hi @tsoy. I hope your day today dawns an OK one!

My wife lost her mobility for almost the last year and a half of her fight. I will say it changed fast and was something she fought hard against, but finally she could only go from bed to wheelchair, then just bed.

In the beginning I could manage one-person transfers with her from bed to chair, but then after awhile that was simply not possible so it would only work with two-person transfers. She did not like them, but she accepted them so she could be in her chair for some of the day.

I learned a lot about how to care for someone in bed all the time. How to change the bed with her in it, how to 'modify' a couple of her old gowns (I had to cut them up the back), hairwashing, how to change her diaper (we always were sure to call them her 'briefs') on my own, and a few others. Necessity is the mother of invention and while my efforts were often just jerry-rigged, they worked for her.

When you want any specific hints let me know.

Peace and strength!