A new kind of charity?

persevere

Wouldn’t it be nice if there were a charitable organization that helped caregivers who may be financially unable to afford part time help. I mean there’s meals on wheels types of things out there I suppose. But it seems that dementia is reaching epidemic proportions these days. There’s a lot of different charities out there. And I know about the Alzheimer’s hotline. But honestly, it concerns me that people simply can’t afford the help they need with this. Is there one I don’t know about? I’m not asking for myself. I’m fine. But I sense from many posts that not everyone is as fortunate.

Chris20cm

I tnought at one time the answer might be the church community that you and your LO belong to. I found, however, that even though there are many wonderful, caring people in one's congregation, there is a reluctance to help and give the 24/7 dementia caregiver some respite. I'm not sure why that is, they must realize how painful it is to go years without a break, but why are there no offers to help?
I know this: family members have a hard time with the pain of seeing their loved one deteriorate physically and mentally, so they tend to be mostly absent. Unless you are one of the lucky caregivers. Maybe it's the same with our church friends.

Timmyd

https://alzconnected.org/discussion/75349/a-new-kind-of-charity

Having lived with DW ALZ progression for many years now, I have all sorts of thoughts on what types of help would have benefited me. My idea is for a care coordinator. Someone who stays in touch with your situation and helps get you connected to resources when needed. For me, the circumstances that led me to realize that I needed help were so overwhelming, they impeded my ability to effectively search and find help. By the time I realized I needed help, I was in a no position to research, interview, and find the help. Someone to stay in touch an hour or so a week. Someone who is on top of my situation. Then when needed, they can help with the leg work and administration of getting needed resources in place. Having to figure it all out on your own, while dealing with the often overwhelming difficulties of dementia care is an area where I could have used some help.

Asking family for help may work for some. For me, along with having their own lives and issues, family had some emotional history with DW that made it impractical for them to be dispassionate and effective in such a role.

SDianeL

Medicare has the GUIDE program that some are using. When I researched it for my area there was only one provider and they got terrible reviews. So it’s got a long way to go. It’s an 8 year program. Here’s the link: https://www.cms.gov/priorities/innovation/innovation-models/guide

Call me Gram

This is why I am so grateful for this message board… because there is no one to guide us through this process quite like you all do. Like, SDianeL, I looked into the GUIDE program for my area and it was not something that would work for me.

It seems that having local connections is important, which is what is missing in this virtually anonymous message board. Perhaps the local Area Agency on Aging may have some ideas of where to turn. (I have not tried that yet.) But, I agree with you, persevere, it is time for something more.

trottingalong

There are no providers at this time in my area for The Guide program. We have two daughters. One lives on the east coast (I’m on the west coast) and the other lives 400 miles away. Our community is very small, but it’s beautiful. My SIL also has dementia and lives in a very large city in California. The family has tried to find assistance but it’s just not there for this disease. It’s like we are invisible. If you don’t see what actually goes on every minute of every day, you really cannot understand the toll it takes on the person caring for their loved one. I’m thankful for this group.

annie51

Ditto @Call me Gram ‘s comment about the Area Agency on Aging. I think they help you navigate the resources that are available but I don’t know if that includes financial help. I do know that they are the first stop for applying for Medicaid waiver program. If you get approved for that program, you can get some amount of hours per week of in home help paid for.

howhale

Resources to support caregivers during or after caring for a loved one with this disease are shockingly limited, at least in my area of north Georgia. Even resources for spouses, after your loved one has passed, are almost nonexistent. Finding reliable and safe respite care is so tricky. I found that so many people who professed to have experience with an AD person really had no idea how to handle the minute to minute demands. Even in hiring part-time caregiver assistance, I had to discharge many because their claimed AD experience was faulty. Never found any government, local, state or federal , support. They likely were good for caring for a physically impaired person but were clueless with an AD person. As the impact of this disease grows with increased numbers, support is a serious deficiency in health care. The stories on here of those who are bordering on the loss of everything they own as they care for a loved one just crushes my heart.

Iris L.

https://alzconnected.org/discussion/comment/265949#Comment_265949

The care coordinator you are thinking of is called a geriatric care manager. They can provide oversight and direction to resources. Some members have used them.

Iris

CindyBum

What a wonderful idea. Honestly, I've been noodling on how I might help spouses or loved one's caring for someone with dementia in my area, but really don't want to become a caregiver myself. But even if it isn't me but someone else here, we've got a room full of experts on what the needs are that could help them get started.

What do you imagine the charity offers in the way of services? Just financial help or social worker connections and….?

Goodlife2025

Maybe if the charity could educate and recruit others (volunteers) on the ways that could be helpful. Teaching others who can be chatty and engaging for a few hours a week. While there are so many more "needs" I would start with teaching the public that helping with care-taking doesn't have to be as scary as it sounds. Until I found myself in this situation I had no idea what might have been helpful.

howhale

I don't have a charity suggestion but I would offer that this forum in itself is a terrific resource which is sorely under promoted publicly. I was well into my wife's progress before I stumbled upon the site. It would have made such a difference in my role as her caregiver as well as so many helpful tips for her. Not one of her doctors ever mentioned this resource. I never saw any promotions for it. All anyone ever suggested were "resources" which, in most cases. were no longer active or existent. I have looked for ways to get the message in front of the association to provide pamphlets for doctor offices, especially those diagnosing the disease. Curious how most of us came to be aware of the site and even decided to try it?

I know all serious medical conditions draw on loved ones for care, in addition to other funded resources. AD, however, in my mind, differs in what it demands and one way to help would be some form of consideration, perhaps in tax relief, for validated cases where a loved one provides the care and/or requires a facility. I'd have to think more about how it would work but maybe it would at least help to stop some of the catastrophic impacts to the patient and caregiver.