A dementia support group has just been started in our part of the state for "caregivers." One month is dedicated to a guest speaker, and the next month is discussion among those attending. Only three meetings so far so no feelings good or bad. DH and I are moving his mom in with us at the end of the month so I feel I need support and suggestions from all who are willing to help. I hope to attend more meetings to gain knowledge, and find any local support that can assist our journey.

My husband attends a group of mild/moderate Alzheimer's while I attend one of two groups for caretakers. Until I started asking hard questions such as bathing, how to feed if they became worse we were just wasting our time.

You have to speak up and ask the hard questions that you need information on. Questions about DNR, who has a financial power of attorney, how to handle family members that are in denial. Without speaking up about your problems the others think they are the only ones.

Last week the hardest question was if you should call 911 at the end of the disease. If you call 911 they would intubate, put tube for oxygen, over riding any DNR. Some did not understand and asked what they should do instead of calling 911. That is the type of question that is hard to discuss but needs to.

Several of the early stage are just getting to the problem of having to accompany their loved one to the bathroom. If family restroom not available which one do you use?

Yes I attend a support group for people who are on dialysis or peritoneal. I am a newer patient who is doing peritoneal. I do get some information from it. I have to drag myself to it. It is always on a Saturday. No real agenda, Just sit around a table and talk to people who have kidney disease. To me most patients just seem to be waiting to die. Me I'm not ready to go yet. so I think these meetings are depressing. I think it is a way to talk to people who have the same complicated problems that I do but don't always get to talk to patients just medical people on a regular basis. Our meetings usually last one to two hours. So it is more of a social hour. We only have about 4 to 5 people attend, always the same people unless it is a party.
Mary

I am the caregiver for my husband who has mobility issues, plus ever increasing 'age-related dementia'. A year ago, my church started a 'Caregivers' Support' group. For whatever reason, attendance has been very sparse. One time, I and the very knowledgeable lady who leads the group were the only ones there.

There is a definite need for this kind of help, but folks seem to be resisting it. I have attended every meeting, and will continue doing so. Just the knowledge that others are in the same type of situation is helpful to me.

I attended a meeting once... not for me. Never went back.

Maifleur: I quickly found that men REALLY didn't like me helping DH in their restroom. Women were far more understanding, especially when I would announce ourselves to the others in the stalls. My announcement also helped clear-out the disabled stall more quickly than would be otherwise. ;-)

Side note: Target, and other stores, frequently have disabled bathrooms. I have b!%ched out more than one group of women, none of whom was disabled, for using these bathrooms. (I have become quite vocal in defense of disabled facilities.)

The only time I took Hubby into a women's restroom the store security was waiting for us to come out and had already called the police. Someone had reported there was a pedophile in the restroom. Except for the time the guy ignored my shout and sprayed the wall when he realized that we were coming in, men seemed to be more open.

In the stores such as Target etc. If you look they are generally labeled as Family Restrooms. As far as looking at a person and deciding they are not disabled eventually you will called on it. Some disabilities are not visual.

Sorry, if the disability isn't visible, like a walker, cane or wheelchair, then they can use the regular stalls. These rooms or special stalls are roomier and have handholds that allow a disabled person to get on and off the toilet. These other people only like the roomier part, and I suppose the added privacy, but should be more thoughtful of those who really need these accommodations.

Sorry for the rant, but needing these for DH, and for myself once with a temporary handicap, it really angers me when someone uses the only disabled stall when others are available just because it's their turn in line.

"if the disability isn't visible, like a walker, cane or wheelchair, then they can use the regular stalls."

Wrong. Please don't assume that there is no disability just because you cannot see it.

I apologize to those whose hips and knees appreciate the help of the bars available in these specialized stalls. Also, to the parents who use these Family Restrooms and Changing Stations to care for their babies and small children.

But, I'd appreciate knowing what other invisible disabilities NEED these rooms.

I have kidney disease and I use a handicap stall. What about people who have heart disease or cancer? They should be able to use the handicap stalls. You don't always have to use a walker or a cane. I think more handicap stalls should be available. I will use a regular stall when a handicap stall is unavailable.
Mary

I have a friend with Meniere's Disease, which causes terrible dizzy spells. Many medications cause dizziness.

Just because you can't see it, doesn't mean that it isn't there.

A "good" group meeting seems tough to find, for whatever reasons. In addition to helping yourself, your own experiences are a benefit to others. Nationwide on any given day, there are also seminars packed with people seeking information. I feel better after having joined several on-line forums, support groups where people communicate The "been there, done that" approach from individuals is great, and many times provide contact to care otherwise unknown to you. All done from the comfort of your home. Just like using GW to ask questions . Some get lots of replies and support, some get few. The topic has nothing to do with handicap stalls.

Oldfixer : you are correct, and I appologize.