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can't find support groups for mom- the patient, only the caregiver.
hysterical1
Posted: Sunday, November 25, 2012 7:02 PM
Joined: 10/30/2012
Posts: 4


why are there so few support groups for the patient with alzheimers.  mom lost my dad 18 months ago and got a lot out of a widows grief group.  now she wants a group of those with new alz diagnosis and we can only find 2. both are full and are half way thru the program.  mom needs to talk to others in her situation.  suggestions.  hysterical1 in raleigh, nc
Mimi S.
Posted: Sunday, November 25, 2012 8:56 PM
Joined: 11/29/2011
Posts: 7027


Hi Hysterical,

Please have your mom join us on this site.

 

I have been trying to get a support group for Early Stage going,

The problem is that by the time most people are diagnosed, they are in Middle Stage. Or they might be in Early Stage but can't drive.

 

The fact that you have 2 in your area says something. You also said that the program is half over. I think what you may have is an introduction to the disease for those newly diagnosed. It is usually a limited time program.

 

I wonder if there are any Memory Cafe's there? This is just a place for those in Early Stage to hang out and socialize with each other.

 

In my opinion, a group that meets regularly for those with the disease to talk about what's going on with themselves and to get ideas is very important.

We should have one in every locality. We are far from there.


dayn2nite
Posted: Monday, November 26, 2012 12:10 AM
Joined: 12/18/2011
Posts: 3097


Hysterical1, I read your profile and what I have to say doesn't address support groups, but it does address her friends.

 

I know you note your mom has lots of friends and she won't let them in, but it's also very possible they are avoiding her.  Many of the people with dementia here and the caregivers of those with dementia have noted that as soon as the diagnosis comes out, the friends disappear.  I know it happened with my mother too.

 

It's perhaps one of the most hurtful parts of the disease, so if you are mentioning her friends to her or insisting she call them, I would step back some from that.  It may be she is trying to reach out to them but they aren't reaching back.


Iris L.
Posted: Monday, November 26, 2012 12:01 PM
Joined: 12/15/2011
Posts: 18354


Hysterical1, I'm glad I read your profile, as dayn2nite suggested.  I can identify with your mom's situation.  I live alone but unlike your mom, I have been asking for help.  The problem is, the people who come don't know how to help a person who is cognitively impaired.

If your mom is asking the same question repeatedly, she may be past the point of a support group because her level of insight is compromised by the illness.  This is called anosognosia.  She will always think she is fine, because in her mind, she is.
 
 

Here is a link that tells more about this: 

 

http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf 

The availablity of local support groups for patients with any form of dementia is very limited.  I live in the largest county in the US and there is only one group.  I was included in the second group to be started last spring but it was cancelled for lack of participants.

As Mimi says, most patients are diagnosed in the middle stages and can't benefit from a support group.  But I'm sure in my large county of several million people, there should be enough early stage dementia patients to support more than one support group.

We patients use this online forum as our online support group. If your mom were able she would be much welcome to join us here.  But I don't think that will be possible for her.

As far as friends leaving, as dayn2nite stated, yes they do vanish.  As I said, they don't know how to help a cognitively impaired person, and some just don't want to continue a friendship on a scaled back level.

It would be nice if you could introduce your mom to friends at an adult day care where she can meet people who are functioning on her level and won't mind if she asks the same question repeatedly.  She needs to be around people who will look out for her.  

You need to beware of strangers who seek "friendship" but are really trying to take advantage of a cognitively impaired person.  That's why an adult day care is better.  

You also need to think soon about making new living arrangements.  Your mom is not safe to live alone, even if she doesn't use the stove and only the microwave.  I had a fire in my microwave.  Fortunately I was standing right there and could put it out. Suppose I didn't have the wherewithall to react appropriately?  I also fell in my living room that same day.  That was the day I called APS for help for myself.  I knew I couldn't go on like that.  A nice social worker came out and tried to get me connected with an agency, but that fell through because of budget cutbacks.

In the meantime I sought help from my medical plan.  They were useless.

I continued on my own seeking advice from the caregiver members on this board.  They have been of tremendous help to me.  Living alone with a cognitive impairment is rough.  Very rough.  My situation is a little better due to my medications and other treatments.  But I am in a dilemma about my own living situation and will need to make some changes in the near future.

Your mom has dementia. That means her ability to make sound judgements about her life is compromised.  You will have to make decisions about her living situation.  Discuss them with her, but you do what needs to be done to keep your mom safe.  Either she has to move in with you or you with her, or she will need to live in an assisted living facility with memory care.  Making this decision is discussed in more detail on several threads on the Caregiver board.

Best wishes in caring for your mom.

Iris L.