AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question My daughter is wanting to move her Stage 6c Mom from her present location in Oklahoma to New Mexico. Her Mom has a court appointed guardian who will make the final decision. She is in an extended care facility at present and would be placed in one in Colorado. My daughter can afford travel expenses to visit her monthly. We know timing from 6c to 7 is not predictable however, my daughter would have no reason to move her if she were near Stage 7 and we know that Stage can last many years. She was first diagnosed approximately 5 years ago and has no serious medical problems other than the disease. My daughter has two young children and assists her husband in his business. Her Mom's rate of decline is increasing. Question: what are the odds of her moving to Stage 7 within the next 6 months to a year?
Answer Hi Bill,
I'd say...within the next 12 months...? Fairly certain she will be into Stage 7 - and I'm sure that is what you fear - that your daughter will go to all this trouble to try and have some time with her mom, and it will be for nothing positive - and your daughter will end up completely distraught. You are a caring dad and you want to protect her from what you know comes next.
If her mom is already needing assistance with toileting, complete incontinence will come before too long. It is as though they stop understanding what the sensation of needing the bathroom means, or what they should do about it.
It does seem like dementia picks up speed in Stage 6, but is probably because the changes seem so dramatic. My personal theory is that we all have a degree of excess capacity in our nervous systems to cushion us, duplicate pathways, as it were, so if one circuit doesn't work, there are a half dozen others to do the job. It is as though the person with Alzheimer's is quietly chewing through all that duplication behind the scenes. Then one day, the last neuron involved in a particular ability winks out, and it seems like suddenly they have taken a major drop. From here on in, every loss will be huge - since she is past the point of subtle loss or change. Everything she loses from here in will seem major, since things like continence, speech, walking, feeding ourselves are so fundamental. Even a minor infection will have dramatic impacts on cognition. A minor head cold can put them into a stupor.
My mother in had a fall in 6b, and made the leap to 7 almost overnight because we couldn't get her back on her feet. Within a few month, she lost lost the ability to talk quite suddenly, over a period of about two weeks. Before that, she could answer questions and carry on simple conversations - after that, only nonsense syllables with the very occasional word or phrase that made sense. She survived almost two years after that point. No one deserves the last stage of dementia. It's cruel beyond words.
The move sounds like a fairly major undertaking. You are right - your daughter does need to very carefully consider what she hopes the result will be. At this relatively late stage, I could understand better if your daughter had powers of attorney for medical decisions or was the guardian - then the move might help your daughter have peace of mind that she was responsible for her care and looking out for her best interests. She could keep an eye on how her mother was being treated, and have regular meetings with the care staff and the medical team, and have input to what goes on. However, given that she's not in the position to make decisions for her mom, might she not find this frustrating and upsetting to watch and not to be able to influence directly?
Even now, her mom likely has a hazy idea who she is, and shortly her mom is unlikely to really recognize her. She won't really know where she is. It becomes increasingly hard to "visit" with a person who you really can't talk to, and who can't partake in activities. At that stage, my mother in law had forgotten she was ever married (even started signing her maiden name), and although I think she knew we were familiar and must be family, I'm not convinced she was very clear on just who her son and his wife really were.
I know your daughter is probably feeling guilty and torn apart - but if her mom is well looked after, treated kindly, and in a good facility where they know her, and where she is accustomed to the routines, those things alone are enormous. A move of 450 miles has the potential to be very stressful for everyone.
With her own young family and busy life, it would also be very difficult for your daughter to keep a good balance emotionally - having been through this with our loved one fairly close by, we felt terribly guilty if we didn't see her often, and then devastated by every visit. I've often said it was very much like having person laid out for months without the closure of a funeral. Her eyes were completely vacant, as though almost everything that made her who she was was gone, and her body lived on. One of the hardest things for both my husband and myself was that our children actually were afraid of her in the later stages and afraid of the nursing home. They found visits upsetting and confusing. They had no memory of her before her illness. My five year old in particular found it traumatic. When he first saw a few gray hairs on me, he cried for days, thinking that meant I was about to become like his poor grandmother.
Imagine if instead of once a month, your daughter was putting herself through this 3 times a week - or more because she feels she must because of proximity. I know she loves her mother, but her first duty has to be to her children and her husband, and somewhere in the equation, she has to be looking after herself.
I know all this sounds bleak - but it is. Emotionally, might it be easier for your daughter to continue her visits and be able to keep her family life more intact and separate? I don't know what the answer is, and I'm not sure that there even is a right one.
Tell her to be good to herself. She's a good daughter, and I know her mother knew she was loved.
