Dementia caregiver resoources in Charleston

Alstro — I think hubster’s condition has progressed to a point at which you can truly benefit from the advice, guidance, information, and SUPPORT from those who spend their days working with caregivers like you. These groups all clearly address dementia patients in general, not just Alzheimers. They provide education, including learning to understand and handle problem situations and behaviors. And they provide support groups, which are also educational resources as well. So for now, dealing with his truculence, resistance, and the pee problems. And these resources should also help you be more prepared as things continue to progress. And knowing what’s to come helps to be more prepared, and potentially to avoid crises.

I’ve looked up the resources in your area and have listed them below, with websites and a tad of relevant information. I hope you can check them out, and determine which one(s) is/are right for you.

=sheila

South Carolina Alzheimer’s Association
for Alzheimer’s and other dementias
https://www.alz.org/sc

snip: **Understanding Dementia Related Behaviors**
Behavior is a powerful form of communication and is one of the primary ways for people with dementia to communicate their needs and feelings. Join us to learn to decode these behavioral messages.
(See all programs)

snip: the Alzheimer’s Association is available to you 24/7 for around-the-clock care and support via our Helpline at 1.800.272.3900.

Best Practice Caregiving
https://benrose.org/best-practice-caregiving?gclid=CjwKCAiAo…

snip: a partnership between Benjamin Rose Institute on Aging and Family Caregiver Alliance, is a free online database of proven dementia programs for family caregivers. It offers a searchable, interactive, national database of vetted, effective programs that offer much-needed information and support. The database is an invaluable tool for healthcare and community-based organizations, as well as funders and policy makers to discover and share high quality programs for caregivers.

Respite Care Charleston
https://respitecarecharleston.org/

Also has support groups for caregivers.

The ARK
https://www.thearkofsc.org/

Includes a focus devoted to caregiving resources: https://www.thearkofsc.org/caregiving-resources, one of which is Caregiver Support Groups:
snip: You are not alone when you are a caregiver, but it can certainly feel that way. Caring for someone with ADRD can quickly consume your life and, since most providers are giving unpaid care, it can create additional stresses in life. It does not have to. Taking time to talk and be part of a supportive group of other caregivers is one of the best things you can do for yourself and your loved ones. The ARK of SC offers a number of support groups for caregivers to help you.

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I forgot one other place, where they list PPA as one of the dementias they are experienced with—although they note that Primary Progressive Aphasia is a consequence of Alzheimers or frontotemporal dementia.

The MUSC Memory Disorders Clinic
Medical University of South Carolina
https://muschealth.org/medical-services/neurosciences/memory…

snip: Living with, or caring for someone with, a memory disorder such as Alzheimer’s disease or dementia is challenging. The memory disorder specialists at MUSC Health work diligently to ensure that you or your loved one receives the proper diagnosis and appropriate care plan. We provide compassionate care to help you enjoy life to the fullest.

snip: Depth of Expertise: Memory problems can affect a range of functions. Our doctors have advanced training in cognitive and behavioral neurology, allowing us to expertly treat both the cause and symptoms. In addition, our team of neuropsychologists, occupational, physical and speech therapists, social workers, and genetic counselors ensure that you receive the individualized care for all of your needs. (Meet your team.)

=sheila

And…

Alzheimer’s and Dementia Support Groups (Patients and Caregivers)
by Respite Care Charleston

They work in alliance with the Alzheimers Association.

https://www.findhelp.org/respite-care-charleston–charleston…

=sheila

MUSC is where we get our medical care, including his neurologist.

Thx. I talked to all or most of these a year or 3 ago but thereq was not a match between what they offered and what I needed. Will try again. Haven’t heard back from the county since my call a week ago.

Aide is home with dh while I accomplish a few things…allergy shot, DERM appt, pharmacy, hunt for low potassium milk and cereal. It’s weird getting medical care without him. I’m in a waiting room now. I’m so accustomed to keeping an eye on him that it’s kind of weird being here alone!

Aide told me that Whole Foods doesn’t charge for order and pickup so I might try that on Friday.

I talked to all or most of these a year or 3 ago but thereq was not a match between what they offered and what I needed. Will try again.

I wonder if your needs have changed since you last looked into these places. I think it would be immensely helpful if you could find a good support group. These will be people who KNOW what you’re going through, because they’re going through it too. You can cry. Laugh. Be pissed. You geta unique kind of support. And you can learn things as well as share coping strategies of yours. Zoom has also made support group meetings enormously easier.

=sheila

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MUSC is where we get our medical care, including his neurologist.

I figured that was likely. But are you involved with the Memory Disorders Clinic? Has the neurologist mentioned becoming involved? It sounds as if they may have good support and guidance. And perhaps their social work staff can help you get more of a response from the city agency you had contacted. A center that is organized around patients with memory loss and dementia, and those taking care of them, should be able to provide more understanding of your situation, and better resources in helping you and hubster cope with it. I was also struck by the fact that they include hubster’s form of dementia among what they’re prepared to help with.

=sheila

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You’re much more diplomatic than I am. :slight_smile:

But I agree with your message. She needs to find help. Desperately.

And I suspect that her needs have changed over the past three years. And it will continue to change. Because the “hubster” is changing, mostly for the worse.

FWIW, I did find the support group at work very useful. There were a few “old pros” who had already been there, and others going through similar stuff to me/us. And different people knew of different resources.

We also attended a support group for raising teens. What we got out of that is that 1poorkid wasn’t so bad after all. In fact, she was practically an angel. We went in there thinking she was unreasonable, unreasoning, and apathetic. Gave us some perspective.

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…perhaps their social work staff can help you get more of a response from the city agency…

This. My impression is that what Alstro needs is not so much support, advice, guidance, instruction, understanding, etc, as people to actually do stuff, such as what the aide already does, albeit too seldom.
What’s needed, IMO, is more aides, and a way to pay for them. If a social worker or geriatric care manager can get that done, yay! If not, they’re not really helpful, just full of false promises.

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My impression is that what Alstro needs is not so much support, advice, guidance, instruction, understanding, etc, as people to actually do stuff, such as what the aide already does, albeit too seldom.

I think it needs to be both. With support and guidance, not only do you feel less alone, less isolated, but you learn how to handle rough spots, rough situations more easily or effectively, feel less at a loss, less always fighting against the tide. And then having more assistance at home is a really important part of the overall picture. And one or more of these centers, organizations, etc may be excellent sources for finding such aid.

=sheila

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“With support and guidance, not only do you feel less alone, less isolated, but you learn how to handle rough spots, rough situations more easily or effectively, feel less at a loss, less always fighting against the tide.”


Not as frequently as you might think.
Support and guidance sometimes only gives what some agency offers - rather than listening to
what specific problems a caregiver has or what specific problems a patient has. Kind of like
the old chestnut about all solutions use a hammer if the organization sells hammers.
What is sometimes even worse is that after a lifetime of working together, suddenly one of
the people becomes a caregiver - without being able to bounce ideas or thoughts off the one
actually receiving the care. Rough rows to hoe. Organizations leave after making suggestions

  • and they don’t have to deal with the actual carry-through to the same degree as the
    caregiver.

Howie52
Agencies serve a valuable purpose, but they do not make one feel less alone or really help with
rough spots.

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Agencies serve a valuable purpose, but they do not make one feel less alone or really help with
rough spots.

Depends on the agency. And I think you and I are talking about very different kinds of organizations. The various resources that I noted are basically groups that began because of the desire to provide support for patients and caregivers in this area. When my dad developed Alzheimers, I learned the inestimable value of that support/guidance/compassion/education. I experience it now in the caregivers support group at Red Door Community (which was the flagship Gilda’s Club, but recently left the fold).

And these associations, etc DO make one feel less alone, and have the potential to help significantly with rough spots.

=sheila

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