Elder Care Support

[Gingerella72]

Does anyone know of any good online support groups for caregivers of aging parents? Both my parents (85 and 86) still live alone in their own home, but I'm having to help them out more and more and have run into a few issues that I have no idea how to handle. I need to start looking at it from a caregiver's perspective instead of "daughter helping out the folks once in a while." If you know of any, can you throw me some links?

And if anyone has any ideas to throw my way on one of the issues, feel free to chime in! The issue is that my Mom absolutely, flat out refuses to go to the doctor or dentist. Even though she has unchecked gum disease and a couple of months ago two of her bottom teeth fell out so it makes it harder for her to keep her bottom partial plate in. It makes it difficult to eat, and she brushes it off like it's no big deal. No, she hasn't been diagnosed with dementia or alzheimers (because we can't get her to the doctor to have her tested). Most of the time she is "normal". She has always been extremely hard headed and stubborn, and a master manipulator. Dad and I can't tell if her adamant refusal of all medical care is stubbornness because she hates going to the doctor or dentist with a passion, or because it's mild dementia starting to creep in. Seriously, her level of stubbornness on this issue is a wonder to behold. We've tried to reason with her, we've tried begging, I've even, out of desperation, tried to shame her into going. Short of making an appointment behind her back and tricking her there, or bodily picking her up and forcing her into the car, there isn't any argument or plea we can put forth that will change her mind. It's baffling, and neither my Dad nor I know what to do next. If we trick her into going, her wrath towards us will not be pretty and it will just make it that much harder to get her to go back. I'm concerned that her health is going to deteriorate, and I'm also concerned that someone will accuse us of neglect/abuse for not getting her medical treatment. Trust me, we want her to get treatment, but how on earth do we get her there without kidnapping her?

[freshstart]

my first piece of advice would be to try finding a community doctor who makes home visits. We have several practices in our area that specialize in care of the elderly at home. You could try bringing the doctor in (having explained the situation ahead of time, tell him you are concerned about dementia) and see if that works better then dragging her out against her will. These docs are used to dealing with all kinds of patient behaviors.

As for resources and support groups, I would go to your local Office of the Aging.

As for the dentist, all of us nurses at hospice tried to find a practice that would send someone if a dying patient had a very painful tooth, for example but could not leave the home. In 11 years, we never found anyone willing to help. Granted, home dentistry would be no picnic so I understood.

As for you being accused of neglect, Adult Protective Services has seen it all. I have seen horrendous conditions and obvious neglect and APS can do nothing. If your parents are competent, they can still choose to live how they want to live. I wouldn't worry too much about being accused of neglect. Keep a notebook of all the times you tried to take her to the doctor or groceries you buy them, etc, if that would make you feel better. I'm sorry you are dealing with this.

[Teacher Terry]

She would have to be declared incompetent for you to force her which would be a court hearing, etc. As a former social worker this is very hard to do. My Dad had a massive stroke and ended up with brain damage. My Mom cared for him at home for 14 years with my help. At one point he decided that he wasn't going to bathe anymore. So we hired 2 people from a home health agency to drag him to the bathroom. After that he let someone bathe him. He also decided that he wasn't going to the doc and didn't go. The only way to force that would have been court and he probably wasn't incompetent because he knew who the president was and the date, etc. Sorry you are going through this.

[freshstart]

I second that it's extremely hard to have someone declared incompetent

[sweetana3]

I find this forum, http://www.city-data.com/forum/caregiving/, to be a great place to vent, ask questions and get some help. Some of the posters have seen it all. Many are actively involved in significant caregiving for relatives and spouses.

[Gingerella72]

Thank you for the replies. Part of the problem is she has a long history of dread fear of the doctor's office that goes back to childhood. And, because she didn't take care of her teeth well, starting in her late 40's she had to have multiple teeth pulled and started wearing partials. You'd have thought that would have motivated her into taking better care of her remaining teeth, but no. So over the years it just got worse to the point where now she has a full upper denture, and only a few bottom teeth to hook a bottom partial onto. So, obviously she's been to the dentist in the past for the former work. But now, she'd rather be in pain and embarrassed to eat out at restaurants (something she used to love to do) than go in to see what, if anything, can be done at this point. It makes me want to beat my head against the wall. She's not incompetent, but she's always had a difficult time facing reality; this goes back to before I was even born. Her level of denial that anything is wrong with her is strong. I think deep down she may feel like she doesn't deserve to be healthy (lots of deep psychological issues stemming from childhood here...all of which she would deny, of course). She's said lots of times over the years that she hopes she dies first, because she doesn't want to live without my Dad. Sometimes I wonder if her refusal to take care of herself stems from that....thinking it will hasten her demise. Which of course screams "depression" to me, but trying to talk to her about anything regarding her health just ends up being a frustrating, pointless circular argument. It's sad.

She does have memory problems, and there have been a few instances where Dad and I have wondered if dementia is starting to creep up, but she's not incompetent. She's just....bull headed.

Thanks for letting me vent, I'll look into our local office on aging to see if they have any resources that could help.

[sbagirl]

As for the dentist, all of us nurses at hospice tried to find a practice that would send someone if a dying patient had a very painful tooth, for example but could not leave the home. In 11 years, we never found anyone willing to help. Granted, home dentistry would be no picnic so I understood.

When my mother was in a nursing home, they offered the option of a mobile dentist service that specialized in nursing homes and would come in and do a basic exam, cleaning, etc. For instance, my mother had full dentures and they examined her mouth for sore spots/infection, checked that her dentures were intact and still fit properly and cleaned her dentures. This was not covered by Medicare but the cost was very reasonable (around $140, I think). I believe they were also able to do some minor repairs to natural teeth, if necessary. She had not been to a dentist for years, was suffering from dementia (so was not always cooperative), and I considered this money well spent. For reference, this was in Pittsburgh approximately 5 years ago.

Do you have any local dental schools? Perhaps they'd consider something like this.

[razz]

Having seen this scenario in my mobile dental hygiene practice, may I suggest that you ensure that your Dad gets the support that he needs if he is the main on-site caregiver. The support for caregivers, to whatever degree the caring is done, is wonderful, giving advice on how to handle situations and the services that are available to assist both. He needs more than you to cope with things. It is amazing how helpful it can make one feel when a peer offers some empathy from undergoing a similar scenario.
It is tough and you need to talk to about this as well. The feeling of going through any challenge on one's own is very uncomfortable.