Do any of you have a live in caregiver in your parent's home?
My mom has been in memory care since spring, but I'm contemplating hiring a close friend who has been a caregiver for many years to live in my mom's home to take care of her. My mom is moderate severe in her dementia. She is able to feed herself, walk, and is still sociable. She is incontinent and is beginning to fall though. She fell in the spring and again this month. She was very sore, but no broken bones.
I'm not sure if this is a good idea because I know mom's dementia will get worse, but my sibling would prefer for her to be at home. My mother is doing a lot better physically and socially than her counterparts at memory care. It bothers me a little because she doesn't have anyone to talk with, but it doesn't seem to bother her. She keeps herself busy.
It also bothers me a little that the caregivers have too many people to take care of, the ratio is 1 to 6. It seems like they have to hurry to keep up with all the residents, and sometimes don't have time to change mom or get her teeth in. I have to go ahead of time to get her ready before any friends come to visit because she might not have her teeth in.
I wonder sometimes what my mom would have wanted for herself, and know she wouldn't want my sibling and I to be stressing. We both have young families. I'm afraid moving mom home might be more stressful to deal with bills, taxes, insurance, paperwork, moving, and what if it doesn't work and have to move her back to memory care again.
What do you think? Have you ever had to make the decision between selling your parents home, and moving to memory care, or keeping them at home and hiring a live in caregiver? If you have hired a private live in caregiver, who do you go to to do the paperwork? Or, would it be best to keep mom where she is in memory care so everything is already taken care of especially for when she progresses?
Thank you for any advice!
Dad passed away, and I did my best to help Mom weather that loss. My parents and I were lucky to have shared a wonderful, close relationship (lifelong).
This was the absolute right choice for me and in doing so I was following my parents’ wishes and requests.
I believe our set-up most definitely prolonged their lives and their enjoyment of life.
My children participated in the care and (like me) feel prideful about this opportunity.
Of course there was a lot of work and it was incredibly stressful sometimes. I was truly heartbroken when they died. I think death is more stressful for caregivers because it changes their day-to-day life.
I had no prior relevant training (other than parenthood), but learned everything I needed to know on-the-job, as the needs changed. This job was more difficult than expected.
The several helpers through the years were CNAs. They were wonderful and I regard them as family now — actually, closer than most family.
For me it would have been more emotionally stressful (and even would still be stressful to me now) had they been in an institution. (I think the US system actually forces most people toward institutions).
There are zero regrets.
Now some friends I know are caregiving for their parents also (they give us credit!).
For writing this, I will get mean-spirited and hateful personal messages from participants on this forum, but this is my story and I welcome any questions you have in getting set up if you choose this course.
My wife requires total care 24/7. I have cared for her since 2006 and she will probably outlive me.
She is physically able, but her brain does not direct voluntary action. She is hand fed and hydrates with a turkey baster continuously, all day, and monitored for safety at night. She wanders aimlessly and sleep is intermittent. She cannot communicate and does not understand her need. We are still learning the involuntary indications of need, pursed lips for thirsty, open mouth for hungry. Scowl for poop, giggle for pee. Dead stop if standing, sudden rise from sitting if it is urgent or too late.
I am watching a two year old that cannot learn .
A caregiver has to be within reach of Christy side every moment with another caregiver available to perform tasks.
We asked ourselves,what did they do with infirm family members when there are facilities?
Two family members left homes and careers in other states and relocated to be paid caregivers. This state is very accommodating of home care.
Christy does not recognize us as similar creatures but we enjoy having her with us at home.
Sure Mom watched TV when she wanted (but always got to choose the channel). She could rest when she wanted, in her own room, in her bed or anywhere else she liked such as on the sofa, on her terms completely. She could take a long bubble bath (one of her favorite ways to relax). This was difficult when her mobility decreased, but we figured it out for her. The rooms were set up to meet her needs and wants. She had a small dog that she adored. Sometimes she wanted to just sit and hug - us or her dog. (Of course he had to be walked occasionally — no big deal).
She went out on “field trips” almost everyday throughout the end of her life, doing things that she had always enjoyed-shopping (just looking around mostly, touching fabrics, getting exercise regardless of the weather) or grocery shopping, museums, restaurants, cinema, concerts, parks, grandchildren activities such as school parties, performances. sporting events and plays. She loved children and delighted in watching them play. We could accomplish this on a random park bench. She loved flowers and we would look at the botanical center, gardens and even Home Depot’s floral department, simply for interaction or entertainment. She loved going for car rides, and watching the sunset, so we would do that also routinely. Of course there were many doctors appointments (her least favorite) - but after every one I would get her a “treat” as she had done for us as kids. She usually preferred an ice cream and there was no dietary restriction that prohibited this. When she wasn’t feeling as mobile, we would do things like go to museums and use a wheelchair.
Naturally there were hard times, hospitalizations, uncooperative days, sicknesses. Some days she was in physical pain.
These activities do not have to break the bank - many free options are available. In my region there are many free museums.
There was social interaction, around every corner, with people of all ages. My friends graciously invited her over and she never suffered from isolation.
At home she got to eat her favorite things because the menu was designed just for her.
Mom loved her care. So did I. I would do anything to take her out again.
All of this certainly prolonged her life.
It is easy to get a background check (for a caregiver) and inexpensively hire a “nanny” payroll company to take care of payment, withhold taxes, etc. - to find one just google.
I had young kids the entire time I was caring for my parents. (The youngest was a baby). The kids were present when Mom passed away. They regard their personal contributions to caregiving of both my parents their most meaningful life accomplishment.
Second, for Mom living at home is most of the time more desireable than a Memory Care Center and it sounds from your question that this is the case for you. Care giving at home, whether by a relative or hired care giver, requires a business approach with certain stipulations about compensation, household management, vacations, holidays as well as duties and performance evaluation. Your city or county social services administration could provide you with model agreements and help you define a specific document. You or someone in your family should retain overall responsibility and management of affairs.
That being said, there are several agencies that provide Home Health Aides who are trained in the physical and hygienic daily care of their Clients, as they term them. Incontinence requires special daily attention including several diaper changes during the day, daily baths and skin care. "Diaper rash" can lead to sores and possible infections if not treated promptly, and Home Health Aides are trained in this care. The agency schedules the Aides in accordance with your needs and is responsible for the performance and behavior of them. Generally they are good and responsible workers who take an interest in their clients, and will do what you ask them to do cheerfully. Perhaps with a live-in care giver you may only need one for the daily bath and dressing, it depends on the capability of the live-in for what can be at times strenuous work.
Daily schedules for wake-up, meals, nap time, bed time in a Memory Care may not be ideal, so obviously you have some leeway to change it at home. If your Mom requires more sleep you can schedule this. Dementia patients who feed themselves take longer to eat a meal; they have to decide what utensils to use, what to eat first, and so forth, and they may take a long time. My wife needs at least 12 hours sleep, so I make a simple breakfast for her at 9 am, a full course meal at 12 and a very light supper, at six, so she gets one hot meal a day which I can share with her. She needs company to eat with, and feeds herself, usually cleaning her plate but taking an hour or more to do so, and she is maintaining weight and good health, so it must mean that she gets enough food on a daily basis. I think the daily life at home is better for those reasons alone.
Unless you have insurance or on Medicaid the cost of providing care at home compared to a Memory Care facility may be significantly less. And there may be tax issues to work out.
Good luck with your decision.
My first reaction is, there was a reason you placed her where she is in the first place, how long ago was that and has something significantly changed for the better? I can completely understand and relate to both your sisters and your desire to have her at home but there must have been a reason you didn't do that and or an event that precipitated finding and moving her to the facility she is in. It doesn't sound like your mom is unhappy where she is from your description and I don't know how difficult change is for her or the move was but those are things to take into consideration as you make this decision. I don't know what the area is like where your mom lives but in many areas 24/7 home care is going to be more expensive than residential care of some sort which is why most LTC policies and Medicaid require a person move to a facility once they require round the clock paid care. Now this is if you plan to pay someone to be with her 24/7, many families find a balance of family and paid caregivers that keeps that cost the same or less than a resident facility and some states are better than others about offering assistance for people to stay in their homes. Those families sometimes find that the time comes when it is no longer feasible either safety and needs wise, financially or both, the balance no longer works and that's the time they move their LO. Again I come back to when and why you made the decision it was time and it seems like that time is likely to come again so you should consider how soon that might be. It's great you have someone you know who is capable, willing and able to serve as mom's primary live in caregiver but that person is going to need and may be required to take time off so you will need more than one person as well as emergency back up in the event of illness or family emergency. An elder law attorney can probably help you do the proper contracts but you are right having all of that covered does not take care of all the things that need to be done if mom moves back home. Someone will need to schedule and cover medical appointments, med ordering and maybe administration, paying the bills and taking care of the house and grounds, you will have an entire 2nd home to run somehow and all the things that go along with that. Who takes care of food shopping and personal supplies for instance, does mom need any medical equipment? Someone will need to oversee caregivers scheduling, payment and taxes. How much extra quality time will having mom home enable you, your sister and families to spend with her? I know for both my brother and I a good portion of the time we spend at Mom's is taking care of things rather than good visit time with her, not that I want any of it to change but I do know it will. If the answer is mom will get a lot more visitors and quality time with family by being home that is a consideration too, an important one. I know others have talked about interaction with people and stimulation and there is no way for me to say one place will give her more of that over the other, only you know that but consider they type of stimulation and interaction too. Some people do much better with routine others not so much, how is that going for mom where she is? How does it compare to what she was getting before she moved in? Is she doing better now because she is getting something she wasn't at home or worse because she is missing something? In some ways her seeming better off than her peer group at MC might be a good thing for adjustment and the future but maybe she is in the wrong place too soon and another option like AL or a place with more freedom but still with round the clock oversight would be a happier medium, these are all personal family decisions and what's right for my family for instance may not be the same things that's right for yours.