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Thu, Oct 31 1:12pm · Ideas for Dinner / Evening / Bedtime Schedule Challenges? in Caregivers: Dementia

100% know how that feels! Even as a young mom, I just wanted the kids out from under foot for a bit so I could focus on my chores. In those days, their dad and I traded off so someone could work on the chores and the other one could wrangle the kids. (Especially when we had foster kids and our brood were ages 7, 4, 3, and 2!)

I honestly think it was easier to distract my kids than it is my person with dementia. In our current situation, I'm coming to understanding that if anyone is going to change, it has to be me rather than her because she just doesn't have the capacity to change. Is there anyone else in the household that could help out with distracting mom so it doesn't always have to be you? Or maybe you could get a friend or neighbor to come help out from time to time so you can get a reprieve?

Just some ideas – best wishes to you. I know this is not easy.

Thu, Oct 31 12:45pm · Ideas for Dinner / Evening / Bedtime Schedule Challenges? in Caregivers: Dementia

I am wondering if there is anything that you could do to defer some of these chores to a different time to reduce the amount of time you have to keep her entertained. Another poster commented that the sundown time is the hardest (which we experience as well). Maybe you could do more crockpot meals to minimize the amount of time you have to spend cooking or do the dishes after she goes to bed or the next morning? We use a meal delivery service that allows us to make meals quickly with minimal prep time because they come already assembled. That would reduce the time that you have to spend trying to keep her entertained and maybe make things a little easier on both of you. I am finding it helpful to steal some tricks from the days when I was parenting my kids and this is one of the things that helped back then.

Wed, Oct 30 3:56pm · Meet fellow Caregivers - Introduce yourself in Caregivers

This is a great idea. I have joined the new group. Thanks!

Tue, Oct 22 3:15pm · Bone marrow transplant in Transplants

I don't know much about bone marrow transplants so I can't speak to that specifically, but assuming you are in the US, most health insurance companies will assign a care coordinator for someone with such a serious medical situation. You might give them a call to see what is / is not covered and see if they can help you find the right care providers that are in-network and would be covered by her insurance. Also, if you are employed and have access to an Employee Assistance Program, you might give them a call. They are getting more and more savvy about the issues of folks like us helping our parents with declining health, so they might be able to help too. Sending good wishes to both you and your Mom.

Tue, Oct 22 3:04pm · Triggers for caregivers in Caregivers

Hi everyone, while we are talking about how to avoid telephone calls, here are a couple more idea that might be helpful. First, if you still have a landline (which I do, because I have my own business), check with your telephone provider to see if they can put a telemarketing blocker on your line. We turned that on and the number of calls dropped from 5-6 per hour to only a couple a week. (And it was free!)

On your mobile (cell) phone, some phones have built-in telemarketing blocker features, but if yours does not, there are apps like TruCaller that allow you to identify and ignore spammers so the phone doesn't even ring. We have implemented both and are now enjoying a blessed quiet in our home. 🙂

Tue, Oct 22 11:58am · Cerebral amyloid angiopathy in Stroke & Cerebrovascular Diseases

Hi everyone. My MIL (who lives with us) has a recent CAA diagnosis. We were giving some reading material by the doctor, but very little about the progression of the disease, other than the neuro's statement of "permanent and progressive." She was in rehab for a while but they sent her home with PT / OT but no follow-up for any of the brain / cognitive issues. (Not even a follow-up with neurology, which seems odd, but since they told us there is no treatment, maybe there is no need for repeated doctor visits?)

We are lobbying for speech / cognitive therapy services but at this point, it has been 7 weeks and we have yet to make any progress, so I am no longer optimistic that we're going to get help from that arena.

She has always been a difficult person but the dementia is definitely making it worse. She seems to alternate between being clear enough to argue with me about the facts of an incident that happened over a year ago, but then other times is so unclear that she is yelling at my husband for "forgetting" the pot roast at the store – which she never bought in the first place.

He seems to think that we should just play the waiting game and react when the next crisis happens but I am wondering if there is information available that could help us understand the progression of the disease, so we can have some sort of plan. I have done a lot of Googling but Dr. Google is unreliable and what I have gained mostly seems to be that there's no predictable pattern and every patient is different. (Which makes it a bit of a challenge trying to make a plan).

Any thoughts or guidance would be appreciated. Thanks.

Sat, Oct 19 10:32am · Dementia and Independence in Caregivers: Dementia

This is a great observation and we had begun to notice this also. The speech therapist was supposed to come today but never called to schedule, and the home health agency's follow up on anything related to her cognitive issues has been pretty much nonexistent. We may have to switch agencies to one that will take us seriously because we have been asking for six weeks now and nothing has been done. We have had great experiences with other agencies but while the professionals in our home all agree that she really needs this, their office's response has been nill.

Sat, Oct 19 10:28am · Dementia and Independence in Caregivers: Dementia

We will talk to him. Thank you for the suggestion.