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Does anyone have suggestions about how to deal with housing with an Alzheimer's patient?
I'm reluctant to move in with my Mom as I feel my own family would suffer even though I'd be in the same city. But, I'm also not sure if I should move her in w/ us. I've also considered selling her house and our's and trying to find something with a "mother-in-law" aspect to it. I've considers reverse mortgages but that wouldn't solve the problem of someone needing to be with her. I've also heard of something called a "caregivers agreement" but don't know exactly how it works.
Finances are a huge factor and I've heard various things about Medicaid "looking back" a certain number of years when someone qualifies for services. I don't want to put my own family's financial future on the hook but I also want to put have Mom in a place that we can keep an eye on her until she advances to the stage where she need s full time professional care.
If anyone has gone through something similar or knows of an inexpensive way to get guidance on this area, I'd appreciate hearing.
Nearly 20 years ago, my maternal grandfather had to be placed in a nursing home following a series of surgeries. My then 77-year-old grandmother announced that she could NOT stay in her home by herself. She had never lived alone... she was afraid, unwell, and lonely. Night-time was the worst. The cost to hire someone to spend the nights with her was astronomical... and my grandparents' Social Security income was pretty well exhausted to cover HIS nursing home care. While my grandmother's home was her castle, we all knew that secretly, she felt if she complained enough, my mother and dad would take her into their home. My mother told me one day, "If I bring Grandmother to live in my house, your daddy will leave." So friends "volunteered" (or did Grandmother twist their arms?) for awhile to take turns spending nights with her, and ultimately, she joined my grandfather in the nursing home... "just until he gets well."
My grandfather lasted about a year in the nursing home before his body wore out completely and he died of cardiac arrest. Seven years later, the Parkinson's Disease that had debilitated my grandmother for over a decade finally won, and she died peacefully one evening, surrounded by her family. Many of those last years, my grandmother was either semi-comatose or at best, delusional. There would have been no way for my mother to care for her at home... and it would, indeed, have spelled the end of my parents' marriage.
I loved my grandmother dearly, but she was incredibly neurotic and manipulative... and a hypochondriac as well. Caring for her at home would have been a FULL-TIME job, to say the least. My mother's decision to place her parents in a nursing home was gut-wrenching. When I say this was a last resort for her, I mean she tried virtually EVERYTHING else beforehand. In the end, she did the only thing she felt she could do... and those seven years were hard on many of us. When still lucid, my grandmother was miserable, and her mantra was, "I'm going home!" She did, for a few weeks - and she showed all of us that she COULD live alone - even at night. But soon her health deteriorated to the point that she had to return to the nursing home in order to get adequate care. After that, the talk of going home gradually dissipated.
My paternal grandmother is 96+ and still lives alone in her own home. There are days that I think she would pack in an hour and move in with me, if I would invite her. But I know this would be a mistake for both of us. And thankfully, she is still mentally sharp enough to realize that her residing with my husband and me would be difficult, if not deadly, for our marriage. With Home Health, family and friends who visit daily, and my grandmother's own good health and mental capacity, she is still able to manage for herself... and everyone likes it that way.
So what DOES one do? Even when it seems that moving your elderly parent into your house is an option with all the right intentions, is it really? Here are some things to consider:
- How healthy is your loved one? Will he/she be able to manage personal hygiene and care? Can they bathe/shower unassisted? Do they use a walker or wheelchair? This is a critical question to ask because most of us are not trained to manage the lifting and balance of another person. Certified Nurses' Aides and other medical personnel are taught to do this properly without injuring themselves OR the loved one. They often wear special gear, such as a "kidney belt" to protect themselves when lifting, and nursing facilities often have special "lifts" that aide in transferring a person from bed to wheelchair, potty chair, or shower and back. When my friend's aunt was unable to get out of bed unassisted, she discovered that the only family member tall enough - and strong enough - to lift her aunt safely was her son-in-law. Since he worked and had a family of his own, he was not always available when the aunt needed to be moved from one place to another. Will you?
- If your loved one requires around-the-clock attention, will someone be there to provide it? I'm not necessarily talking about physical attention, such as help with bathing and the bathroom and just maneuvering around the house. I am also talking about meals, medication, and yes... entertainment. Does your loved one know how to manage the television remote, the thermostat, the cordless phone, and the coffee maker? If left unattended, will your loved one try to cook... and would this be safe?
- If your parent is unable to care for his/her personal belongings - are you willing and able to do this? Do you have time for extra laundry, linens, food prep, and other responsibilities?
- How accessible is your home for an elderly person? Are your bedrooms upstairs? Are your shower and bath tub equipped with grab bars and other safety features? Do you have hand rails and ramps for access into your home from outdoors? Is it possible for each of you to "escape" and have private time away from the other?
- If you elderly parent is still mentally alert and desires a social life, are you able to accommodate this? How will you feel about entertaining your loved one's guests in your home? Will you be able to transport your parent to his/her social activites that occur outside your residence?
- How strong is your network of support? Is your spouse on board with this decision? Do you have siblings and other relatives who can help when asked? How do they feel about this decision? What about friends and neighbors? Will you be able to manage your own family/job/life and provide a quality life for your elderly parent at the same time?
- What if something happens to YOU? Suppose you get sick, or worse yet - die. Who will care for your parent then?
I realize that many people feel as though they do not have any other options. Assisted living facilities are too costly for many. Nursing home care can cost upwards of $3000 or more per month for those with personal assets. In-home "private pay" care is expensive. This is a common topic on a Caregiving group I belong to at AARP.org - "What do we do with Mom or Dad when they can no longer live alone?". Often, the only solution seems to be to take them into your home and do it all yourself. But you must carefully weigh this decision and look at all of the ramifications for each person involved. Investigate all options... and all avenues of assistance, from family and friends to Home Health agencies and more.
I am blessed that my grandmother is so healthy and able to live alone... and I know this! I've been on both sides of the coin, and I can assure you that this is a much easier road. It is a juggling act to make sure that enough support is in place for my grandmother so that she has all of the care she needs to be safe, healthy, and comfortable. But caring for her in my own home would take this "act" to a whole other level. I think we all want to live independently as long as we possibly can. The reality is that for many of us, the day will come when this is no longer an option. If you ultimately decide to move your elderly parent into your house, be certain that this is the best choice for everyone. Do your homework and weigh the pros and cons carefully. Moving your parent into your house is sort of like squirting toothpaste out of the tube... once it's done, it is virtually impossible to go back.
I would invite you to visit my blog, The Deli, for more information about caring for elderly loved ones and friends. I also strongly recommend you get a copy of a book my mom write about her experience, When Heads and Hearts Collide. You can order it from her website at www.arlinechandler.com
Best of luck to you... keep us posted and let us know how things go.