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!
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.
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.
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.
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.
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.
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.
I agree with commenters who say staying at home with 1 person is a sterile environment. Unless your friend has prior experience, she may be shocked at how boring care taking can be.
Unless your friend has a medical certification, she can't (or shouldn't) be administering any medications to her, even pills. Does she even have any first aid training? What if she's not as good as you thought...then you're going to ruin a friendship letting her go. What happens when your friend is sick or goes on vacation? Who will tend to your mom then?
If I were you I'd have your mom in long term care where there are many eyeballs on her and they are trained and there are things they can do with her socially. I also agree with hiring a companion to hang out with her for a few hours on a few days per week. But it begs the question: if your mom doesn't remember that she was visited, is it of any benefit to spend the extra money and hire someone for this? Is it really for your own guilt? I've had this dilemma with my MIL. No short term memory. We visit her because we love her but she forgets we were ever there 5 minutes later and gets no other benefit from our visit..
Make sure the facility she is in also has hospice care so that she won't need to be moved when "that" time comes.
Good luck!
No situation is perfect, but in memory care, your Mom has the best care, access to staff, activities, drs come to see her(no getting in /out of the car!), PT, OT, etc..
With my Mom’s moderate/severe dementia, we know additional care will be on the horizon..We will bring in a part time private CNA, in due time..
Your love, & providing the best for Mom, is a Blessing..She “senses” that, even if her communicative skills decline..Prayers for you, Mom & the family🙏🏻❤️
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A live in caretaker will probably not be able to hold up to 24/7 duties, so you're not going to be able to do it with only one person. Family members get strapped with 24/7 and accept what they can't do anything about, but a friend is not the same. You're going to need back up caregivers to allow for days off, vacations, illness, personal time away from the house. The other thing is, if this friend moves in and gives up her own residence and things don't work out, she's going to be looking for another home within a, possibly, short period of time. Not worth having issues destroy a friendship.
Lots of people got there before me: hire this close friend to supplement the care your mother receives in the facility; but *don't* take her away from the safe, fully-staffed, fully-equipped environment she's doing so well in.
Even if you took your mother home and everything worked out well with the friend for the time being - and the friend has endless stamina, never needs a break and is in perfect health - you know that the time will come when one person cannot meet your mother's needs and you will have to get her readmitted to a facility. By that time your mother will not be functioning well enough to adjust, and it will mean another big change just as she's become completely unable to cope with it. And that is if everything goes *well*.
What's your brother's main reasoning? Is it financial, social, a bit of both?
Talk to the Social worker over there. If there is one. Or get one. I agree mom is maaybe better off there right now, But there is alot Riding on her Finacial deal and there is much to consider. Dad is staying Home, My sister helps him and is His POA. He would have had to do a Spend time down the line to get Medicaid and didn't want to do this, Thank God he is doing okay.
God bless you and See what is Best, I agee though, She is probably bet left There for Better care.
What would an in home caregiver, one person, be able to offer your mother on a day to day basis, by comparison, and what would the cost be? When my cousin hired an in home caregiver for her father so he could stay in his own home, she wound up filling up suitcases with all of the valuables in his home and having a truck pull up front to load it all up. I'm sure that's not a standard story, but one of many nevertheless. I'm sure there are horror stories out there with facilities as well, so be sure to make your choice based on informed decisions. In my experience, I 100% believe that my mother is still alive at 92 BECAUSE she's been in Assisted Living and Memory Care vs. at home with me. The ALF caught her first bout of pneumonia immediately, had the in house doc prescribe antibiotics right away, and saved us a hospital trip and possible death from the #1 killer of the elderly. We've had many such instances where the ALF or the MC stepped in to ward off disaster.
Best of luck!
My siblings and I followed our mom’s wishes. Several years, before being diagnosed with
dementia, she told us that she does not want us to take care of her in our homes. She knew it’s hard on marriages and family (she took care of grandma). Years forward, when the doctor/psychiatrist told us mom had dementia we put her in an assistant living facility with memory care. She complained but eventually adjusted in the Assistant Living side. The caregivers were marvelous. She made friends and enjoyed the outings. Mom has passed on. Not from the dementia but pancreatic cancer (we caught it to late).
Now I’m helping my husband with his parents. MIL has been-diagnosed with Alzheimer’s (2 years now). My FIL (1 year). We researched Assisted living facilities in our area but couldn’t put her in because my MIL was aggressive/combative with all who tried to help. She refused all medications. The Al facility told us they would accept them with a private caregiver for her. Way to expensive. We then researched home care. We now have 24/7 care for them. They hated it the first year but adjusting now. They wanted to know why there are people in their house, We just tell them Kaiser (their health insurance) said so or they have to be in a hospital. They accept care because “Kaiser” said.
I hope my experiences help you.
Stillhere1
We are struggling with same situation with my 88 yr mom. The 24/7 is running higher than or close to the assisted living in area of GA.
Mom wants neither but our stress, managing caregiving, changes in staffing and mom’s lack of social interaction — leads us to looking more closely at assisted living with memory care available as needs increase.
This forum is helping us to learn and to not feel alone or that we are being
uncaring when examining the best options for mom and her kids (all in our 60’s)!
A year ago I had to go home regarding Mom and other issues of which I was never made aware.
I took Mom to the Dr as she had not seen him for over a year, my sister lived with Mom/stepfather and she moved out without my knowledge!
I told the Dr after he explained her issues with me immediately she would stay in her home for as long as possible BECAUSE I PROMISED. My promise only lasted 1 month. Both Mom/stepfather have Alzheimers, keeping them in Mom's house was TOO DANGEROUSE FOR BOTH. There's a swimming pool 3-4 steps just outside the patio door. Front street is extremely busy with traffic and speeders. In-home-care babysitters cannot administer meds, cannot touch the bottles. What if either one of them "thought" they needed their meds or took the wrong one? Mom is also diabetic, in-home cannot inject her insulin. Stepfather gets lost, drives the car, has hit other vehicles; what if he killed someone doing this?
As the Dr told me, the children all have good intentions, but with our lives being as they are today; those intentions don't always work the we had hoped.
I don't know your age, but those of us from the baby boomer generation are facing these decisions more and more. It isn't we no longer love our parents or do not want to personally care for them, but we wish this day would never come as "our" life decisions have made caring for our parents more than difficult due to distance, jobs, time available as well as being guilt ridden because we don't want to make this decision.
The worse part of it is that gap in age between parent-child becomes less of a canyon to just a jump over a crack.
OUR day is coming closer and our children will be making this same decision for us.
I personally have not experienced that diagnosis and I have read here from many others that have been changing incontinence products for a great deal longer.
Very interested in where you get that.
I have to agree with your siblings. My 1 sibling lived with our Mom/stepfather for 10+ yrs. Even though I told her I'd help pay for respite help and some other things she would tell me Mom doesn't want strangers in her house. I was looking into in-home care even though my ugly step-sister took over without consulting me and expecting Mom to pay for it, the owner of the company FINALLY backed out and told ugly step-sister that in-home care CANNOT help with medications nor can they do anything but clean, take to appointments etc and are VERY WELL PAID BABYSITTERS.
Your friend CANNOT LEGALLY administer ANY MEDICATIONS EVEN ASPIRIN SPELLS LAW SUIT! IN-HOME-CARE CANNOT ADMINISTER EITHER.
My Mom/stepfather are in an assisted living group home. It was very very hard for about 2-3 months because they wanted to go home. We, the family and the caregivers tell my stepfather that Mom is very sick and the doctor will not let her go home yet. He says Oh that's right, I forgot. They now "call their suite home". Mom will tell a caregiver she's done eating (when she talks) she wants to go home, gets her walker, turns toward the hallway and goes "home". My stepfather has begun asking me if I'm his oldest daughter (UGH!) when I visit every month now.
This group home has Tuesday bingo day, a musician come from the manager's church for singing day, celebrate holidays, birthdays or just so something to surprise the residents. There is a resident who isn't there for mental issues, she's by her choice because she has to use a wheelchair, has fallen and her children live out of State like I do. The owner has 3 group homes, he as well has all of his employees are Romanian who fled Romania due to their Faith (Pentecostal, this is great as we were raised Pentecostal). They treat every resident as a family member. I asked why they took such great care of everyone, the answer OUR TRADITION WITH FAMILY IS YOU TAKE CARE OF YOUR FAMILY AS THEY AGE. It is the job of the YOUNGEST sibling to live with the parents EVEN AFTER THEY MARRY and take care of the grandparents/parents. The youngest receives the home as thanks for taking care of the grandparents/parents. The older siblings understand this are never angry about what the youngest receives for this family duty.
I never worry about Mom/stepfather being there. Mom's Alzheimers has become more aggressive in this past year and stepfather's Alzheimers/dementia is becoming worse also. Mom fell about 4 months ago, she got up from bed without pressing the button for help, so no one knew or how long she had been on the floor. She was fine after taking her to hospital and neither she nor stepfather remember it.
You can walk into this group home and EVERYONE is happy. There isn't that OMG hold your nose smell. What you do smell is delicious home cooking going on. The caregiver's parents come to US on a visa, Momma does the cooking, Pappa takes care of the property while they're visiting their children!! This is Romanian tradition at work.
I'm happy when I get a smile from Mom, a look on her face that I know she recognizes who I am or my favorite "what the hell are you doing here"? She tells me she loves me after I tell her I love her.
Memory Care is just an oxymoron.
No one can ever care for their memory, it's gone when it's gone and WE as their children have to accept it no matter how hard that is to do.
My Mom is just sleeping more and more now. Not as in needing hospice, just something that happens with Alzheimers which is different with every single person. Like snow flakes, no 2 are alike.
I hope this helps you and something to help discuss with your siblings too.
They can not if you hire through an agency.
If you hire privately and not through an agency you can instruct them to do anything that you can do.
You also have the benefit of the burden of care being spread out among many caregivers, in a good facility that means they are policing each other and picking up the slack when someone else is having a bad day or is ill, with a live in caregiver you place everything into a single pair of hands.
Then there is the whole headache of finding and keeping a good person, setting up contracts, withholding taxes, arranging alternate care for the caregiver's days off, vacations and sick days, as well as managing all the medical appointments, home maintenance, grocery shopping etc etc.
I guess you can already tell which would be my choice, leaving her where she is and working to improve any deficits you've identified would be a far better use of your time and resources.
There comes a time when it will take a village to care for a person, and with memory issues, that time will come quicker than you know it. Keep Mom where she is comfortable.
My Dad had around the clock caregivers, 3-full time shifts each day, that way each caregiver could have a good rest until her next day shift. But the cost was expensive, as in my area it was costing my Dad $20k per month. Eventually it was his decision to move to senior living and he was happy as a clam being there :)
Please do not project your issues onto mom, nor your siblings preferences. This is about mom and her wellbeing, which sounds like she is being taken care of pretty good.
I would find out how her skin is doing if you believe they are leaving her in wet briefs. That can't be denied, our skin speaks for itself. Could it be a situation that she has gone after they changed her? Ask the DON to help you understand what the process is for dealing with wet ones.