24/7 Care at Home

tmm2424

Has anyone managed to provide high quality care AND keep their loved one at home long term?  We have a caregiver who comes 4 times a week to relieve my dad, but we are approaching the point where my mom will need more skilled care. Does 24/7 in-home care even exist?  Has anyone successfully kept their loved one at home as the disease progresses? Or is residential memory care ultimately necessary?  I'm aware this will be an extremely expensive option (if it even exists), but I would like to understand how/if this might work.

towhee

Hi, tmm, yes this can work out but it is rare. There must usually be at least one readily available family member, better two, highly involved, plus paid care, usually two, so they can spell each other. Better if it is the same caregiver and not staff who change every day. How feasible depends on employment laws in your state, how many hours they are allowed to work. Also depends on  loved ones behavior, physical needs, and and whether care location  can handle increasing physical disability. The screen name of one poster who did this was lickety glitz, I think I have that right, her mother has passed away, but her posts might still be on the forum.

star26

Plenty of people keep their loved ones with dementia at home until the end and avoid memory care or other facilities altogether. One of the reasons my family chose to do this with multiple family members is because we knew the care would be better at home.  Some members here have removed their LOs from facilities and switched back to home care for the same reason. Memory care is just one option, it’s not inevitable. You can get as much help as you want if you have the money to pay for it. Adult daycare is a relatively low cost option for getting help and a break during the day. Some of them do showering etc. (Ex.$65-75/day). Most costly will be paying hourly to an agency for the bulk of the hours. Many people find their own private caregivers and sometimes offer a room for overnight stays if that’s needed. With private caregivers you can make your own payment arrangements including offering room and board as partial payment. It's better to rework the care plan before your Dad reaches burnout. For instance, introduce daycare now, slowly increase it as she adjusts, and keep the caregiver 4 days per week. Your Dad may appreciate being able to take a day off in his own home with no one else there. 

MN Chickadee

It depends on your location, you loved ones needs/behaviors, and finances. Certainly some people do keep their LO at home until the end. Paying for in home care gets spendy. Depending on location, you can assume hiring someone will be $20-30 an hour. Memory care facilities cost half that (where I am a memory care facility is about $7,000 per month and paying for 24 hour care in the home would be twice that.) Indeed adult daycare is often a cheaper way to get respite during the middle stages of the disease. Some are more medical and can handle more advanced symptoms like incontinence and immobility. Many people keep their LO home, but it tends to be people who have a good support network and/or good financial resources. If family members  can cover 1/3 or 2/3 of the day they maybe hire help for the other shift of the day. Some have had live-in caregivers and involve room and board in the compensation arrangement, but you do need to check into laws in your state. You may end up having to pay over time after 8 hours. 

If it hasn't been done, you should consult an elder law attorney for planning for her long term care wherever it is. He or she can help answer these types of questions about the employment laws involved, paying for care, preserving assets for dad and his life/future care, any benefits they might qualify for. Your dad should have a back up plan and be ready to switch her to a facility if something happens with his own health. A broken bone or something minor can mean a major upset in caregiving so a Plan B is really important.That means Medicaid planning with an attorney ahead of time.  I put my LO on wait lists for facilities long before we needed them just in case a crisis hit. 

Suzzin

We tried 24/7 care for several months, and there are a number of small problems that all added up to an expensive and unworkable situation. First of all, care is expensive! A fully insured and bonded agency charges $25 an hour, plus tax, about $20,000 a month. 

The bigger issue for us was finding carers that were a good fit and also reliable. The good ones want a regular job, so they split the day in two 12 hour shifts. That means they can only work three days a week, so you need 2 regular daytime carers and 2 regular nighttime carers each week, plus 2 people willing to pick up the extra day. The extra day person was constantly new, my parents didn't know her and she wouldn't know how to best help them. And the regular carers were mostly good but would take vacations or unexpectedly call out and then we'd have another new person. I still had to do all the cooking, cleaning, and laundry.

We found that my parents are fine for most of the day, except when they aren't, so we had the carers full time "just in case" they were needed. It came to a head with my dad getting incredibly frustrated having strange people staring at him all day, and my mom kept packing to go home because "these people" live here, she wanted her own home. I have no idea if this will work or not, but this we we are starting to move my parents to a multi-care-level assisted living facility, so they can be on their own most of the time and help is just a button push away.

Cynbar

Yes, there are definitely families who are able to keep their loved ones home through end of life. It can be complicated and stressful to work out, but once you hit on a workable arrangement, it can go smoothly. In my area, two solutions are often used. I haven't seen many who pay agencies an hourly rate, it gets too expensive and confusing to coordinate. But , there are a number of small groups of caregivers who work together and independently, they work out coverage amongst themselves and charge less than an agency. Most were previously caregivers at an agency or facility, who have gone out on their own. There is generally no clearinghouse on how to find these caregivers, it's mostly word of mouth --- families start asking friends and neighbors, or their church, that sort of thing. The other solution that I have been seeing is hiring live-ins from an agency that specializes in that type of care. Here in southeastern Massachusetts, there are 2 companies that are well thought of. The agency vets the workers, supervises them, handles payroll, and arranges coverage when they take time off. They also make a switch if the fit isn't good.Cost is less than an agency or placement in a facility.  Anyway, both these solutions depend on finding the "right" caregivers. And both are private pay. But, when it works out, it can be the right solution for all involved.

Rescue mom

Yes, several people here have kept LOs at home for the duration. They all had several hired and family caregivers. It’s do-able, it just gets very expensive. Stars numbers/comments were like my experience.

Nights and weekends can be more expensive. There were many times when I had to find one for nights and weekends and  used an agency because no one else could be found. At least the agencies almost always have people lined up.

Keep in mind you’ll need 2-3 besides yourself, and you have to plan for one getting sick, or having family issues, whatever, not show up. In my area, a caregiver charges maybe $25/30 an hour; agency caregivers cost more, maybe $35-40. Multiply that times 24 hours times 30 days/month. In my area, an excellent MC facility costs less than half half what at-home private care does.

You also are likely to need special beds, lifts, wheelchairs etc. toward the end. Sometimes one person can’t physically move a PWD who has mobility issues without a lot of help. Bathrooms may need special equipment to give them access.

Some of those here who kept them home built/bought a new place, or did substantial remodel/additions, to accommodate the PWD.

King Boo

You might want to look for some posts from TessC, a wonderful former caregiver who took care of her mother at home for the entire journey.

Finances help with options.  Also, care needs can vary depending on the presentation of dementia.  

There are many excellent caregivers who cannot provide the continuous care needs from start to finish.  So many factors to consider.  

ButterflyWings

Some choose to have their LOs evaluated for hospice support as early as possible. If eligible, the equipment like hospital beds and many adaptive items like bathroom supports, rails, chairs and also meds, toiletries, and incontinence supplies are then free to the family. Even cases of Boost for nutrition support.

The hospice team also provides weekly nurse visits, several times weekly aide visits (bathing, some grooming, turning/lifting, etc.), occupational therapy input, social worker services for caregiver +family support, and respite options. It can really, really help with costs and backup for many months or more. This was an unbelievable help when I was the 24/7 in-home hospice caregiver for a now deceased LO (paraplegic stroke victim, no dementia)

jfkoc

My husband at home for the duration. The last year I had help 3 hours 2x a week. That expanded to 8 hours 5x a week. The last 3 months it was 24/7

May flowers

We had 24/7 care for my MIL with cancer, she had mets to the brain which caused a lot of the same behaviors as dementia, plus she needed help with all daily tasks - bathing, toileting, etc. My FIL already had dementia so it was a double whammy for the caregiver but he was at a moderate stage at the time and did not require much care. The agency we used had a mother-daughter team, and they alternated weeks. They also cooked, did light housekeeping, laundry, took them on walks, to the park, doctor appointments. Others came in for nursing, PT, and palliative care, and at one time IV antibiotics (which I took care of, and the nurse checked on the line a few times a week)

We only needed it about 6 months. The cost was lower than others have paid, but some of that is the cost of living where we live. I can say it cost about twice what memory care costs where we placed my FIL recently. 

We considered a live in caregiver for my FIL, but he was never comfortable with them, it was always very awkward. He also never felt really comfortable at our home, like a guest. He likes MC much better, and has made friends. He tells his children it’s his new home and he is very proud of his apartment and showed my BIL everything and everyone when he visited. If my MIL were alive now, we would have consider the 24/7 again, as they both wanted to be at home, but every situation is different.

abc123

Dear tmm2424,

You can reach Lickety Glitz at

StumpedTownDementia.Com. 

She and her team took care of her Mom at home until she passed. 

aod326

So the trajectory for DH was a little different. By mid-2020 I realized he needed someone with him all the time and, as I was working, that couldn't be me. He was in a rage stage, although not violent, and wandering, even with all sorts of alarms etc in place. The primary reason I chose MC rather than a carer at home was that he was super-social. He would talk all day long, even though he made little sense, and I felt he'd benefit from the socialization of more people at MC. (Adult day care wasn't an option, mainly because of COVID.)

DH's progression was quite fast and by January of this year, he was unable to walk or talk so the reasons for placing him in MC were no longer there. I decided to bring him home, with a live-in carer. I had hated the idea of someone unknown living in my house! How was I ever going to have privacy? What happened though was the agency I used provided Dawn, who was a wonderful fit. Not only was it no effort having her there, it made things better for me, because I had someone to talk to about everything.  When she had a pre-arranged week off, the fill-in was awful, so it is definitely important to make sure you meet the person, and ask for a change if they don't suit.

Price-wise having a live-in was about the same as MC, $300/day; although I did notice the increased grocery bills! The priciest way of doing it is to full time hourly staff - in NJ, that comes out to be double the cost.

Looking back - he died in April - I'm totally comfortable with the are choices we made, albeit I wish with all my heart that we hadn't needed to make them.

Good luck!

mijus

Yes, it is very possible to have 24 hour care. My wife has mid to late stage AD. I employ 5 very good CNA's who take care of her 168 hours/week. They do an excellent job. It is way better for her to be at home with health care instead of in a facility.  I employ these 5 ladies directly, no agency. They are scheduled throughout the week so my wife has the same people month after month. It's the best situation for her and myself given her condition. It's very expensive but well worth it.