Cost of memory care for an Alzheimer's patient

@memoriestomoments Thank you so much for sharing. Can you say how much it costs to have the home care you described? Do they cook for your husband?

Dear @llthomson

Sure. I nominally pay $350 per day to the caregiver and pay an additional $20 fee to the agency for the back up. That comes to $11,100 per month. I have long term care insurance that reimburses $117 per day, so that drops my effective cost to $253 per day , or $7,590 per month.

So, without the LTC insurance, I am in the range of a memory care facility, but the level of care for my husband is so much higher, and I get so much flexibility. Of course, his emotional peace and the ability to live out our relationship together in our home through all these stages are the big wins

About what they do. They handle all the Activities of Daily Living. I pitch in on things that may need a bit of persuasion (e.g, showers for a time) and things that I am picky about (e.g., a good shave every three days, while they do an electric razon pass the other days). They prepare breakfast and lunch. (I set the menu of choices and provided cooking instruction when needed: “Hmmm… yes, plain canned tuna on dry lettuce could be called ‘tuna salad’, but we like it like this….) I generally cook dinner because I like to cook good food. They do all the kitchen clean up (yay!). Take out the garbage (yay!) I do some of the laundry (once again, picky) and they do the straightforward laundry and all the folding.

The benefits are great at all stages. When we were still very active, it was such a godsend to go places and have a caregiver with us to take him to the bathroom, help him eat in a restaurant or friend's home, help him in and out of the car, stay with him while I got the car, and simply provide more conversation and stimulation on each excursion. I’m getting nostalgic just writing this. We all really had such a great time in those days.

Hope this helps!

@katrina123 , I was very apprehensive when driving my cousin to Memory care, but it was a godsend. She needed a higher level of care than Assisted Living, so I called the facility, which I had visited weeks earlier, and they said come now. We’ll serve her dinner and get all the paperwork done. The director and staff gave us a Downtown Abbey reception…all standing in front of entrance with a wheelchair, smiling, warm welcomes…..they took her to dinner while I signed paperwork. They also unloaded her luggage and unpacked her things. When I got to her room, she was smiling and watching tv with her roommate and new best friend. She seemed to relax, since the staff knew how to care for her. I knew I had made the right decision. This facility was located in a rural area in NC. Costs are expensive, but far less than other parts of the country.

@katrina123

So sorry to hear of your recent difficult experiences.

FYI: I just had a long call with our nephew who has placed his father in an assisted living facility with memory care. He stated that he wished he had asked about the rate of turnover in the staff that actually works with the patients. This makes a huge difference in the quality of care. For example: Part of the staff does not have the skills or inclination to help a person with dementia with toileting, and then they blame it on the patient.

I hope you find a great place for your husband!

Dear @katrina123

I understand well the fears that you are facing. My husband and I have been together for 48 years. You have us beat by 10 years, years that I, sadly, will not have with my Gary. You have many decisions to make.

First let me share a quote that I turn to again and again:
“Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength.” — Charles Spurgeon

Now I will share my story, not to suggest that you think or do what I did, but simply so that you get the benefit of what I experienced.

Last year I almost died. One night I found that suddenly I could neither type nor write. Other symptoms started to appear. By the time I realized that I needed serious neurological help, AND made arrangements for my husband to enter memory care if the ER determined that I had a serious issue, things were dire. It turns out I had a massive bleed in my head. Thank goodness they were able to operate immediately and, amazingly, I recovered fully.

In the meantime, my husband was in a medium-sized facility with a good reputation, 5 minutes from our home. He was still going to a day-program from 10 – 2pm and, first, in the week after the surgery, my brother would visit him daily. Then I visited him daily. He was chipper, was happy to see me, did not complain when I left. Friends, family and our neurologist told me that that was the living arrangement that made sense for his stage and for my health and life. I knew I needed the time to fully recover. I also had the opportunity to realize that the care solution that I had been trying to make work was unsustainable: Caregiver for the morning routine, day-program mid-day during the week, trying to get a caregiver for the evening and weekends. It left me with a huge management job and no time blocks that suited what I needed to get done. So, I viewed the medical crisis as a well-hidden blessing and I committed to the new arrangement.

But about a month and a half to two months later, things started to sour.
 He started resisting me leaving. I hired a companion to be with him between dinner time and bed time, so he had dedicated engagement and conversation. The other residents generally could not talk and the staff was generally people with limited English language capability
 More worrying, he started to get anxious and fearful. I think it was partly the noises in the facility: The other residents sometimes cry out, etc. He talked about “mean boys” who hurt you. He started getting resistant to toileting help, probably because of the many different people involved, with different levels of care and patience.

As much as many of the staff members were sweet and liked Gary, and the managers were understanding and collaborative, I could not bear having him feeling that way and did not see a way to make it work there. I considered another facility that had more activities and an event stronger reputation. But, on the home front, I also was unsettled. Despite the company of our two dogs, the house felt very empty. Also, I was having a hard time fitting our relationship into the hours spent visiting him daily.

Mindful of what I had learned about the level of help I really needed. I decided to investigate live in care. I learned that the large agencies can cost twice as much as a facility, and you can end up getting dozens of different people sent over time. Instead, I found a small agency that represents independent care providers, but also offers the comfort of having someone who will make sure that I have coverage if my regular caregivers cannot come or cover for each other. I was able to interview several people. Since last fall I have had two wonderful young women, one 5 days per week and the other 2 days per week. They focus exclusively on Gary, his emotional needs as well as his physical care. I have the flexibility to go anywhere at any time. I am able to focus on being his wife, social secretary, cheerleader and pal. I have time DURING THE DAY to attend to administrative tasks, home maintenance, etc.

I had worried about having “strangers” in the house, in terms of privacy and security. They stay in their room when not with Gary. I worried about having to cook for everyone. They take care of their own food. I worried about insurance. I was able to add riders to my homeowner’s policy. Yes, there are things you need to work out about daily routines, etc. It is also important to invest in the relationship of respect and appreciation with the caregivers.

Things have changed a lot since last fall. Gary was fully ambulatory and talking and physically healthy then. He is now in hospice care at home. We (the caregivers and I) have worked through the adjustments together. It is wonderful to have knowledgeable, caring partners regarding all the tactical elements. It frees me to work actively with the doctors and do the research needed on the medical elements.

Your situation. What I wrote above is what I experienced and what I found that worked for us. Your own health condition may require much attention. Your husband’s symptoms and needs may be very different. Your own comfort with overseeing his care may be different, etc., etc.

There are good facilities. If you are not part of a local support group, you may consider joining. They are great sources of insight into local care facilities. You just have to be clear about the limits to what they can do for each resident, given their business and staffing models.

Just know that there are options. Take your time and pick based on a real assessment of your priorities. We are all wishing you the best as you navigate this difficult transition!

We pay about $9900/mo-my husband is also a veteran and we went through a disability process and the VA is helping by almost half!

@annieb46 Welcome to Mayo Clinic Connect! I am so glad that you found us. You can see how this program works with everyone helping each other. If you put the @ sign in front of the person’s name that you are responding to, it makes it easier to follow in the discussion.
@annieb46 Is your husband in a VA facility or at home? And what is his diagnosis?

@memoriestomoments Can you say who you were insured with? It is great that your LTC insurance is actually helping. I have heard bad stories on that kind of insurance. I am thinking that if I cannot get it for my husband now (he is already diagnosed with MCI), that maybe I should get it for myself...Was he on any medication, did he try the infusions Leqembi or Kisunla? Thank you again.

@memoriestomoments

Never knew to ask those questions. Hope the caregivers in my husband's Memory Care facility are educated. He is going to need a lot of help. He gets lost in our 3-bedroom home and he often asks me how to get to the bathroom.