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MC Decision Time & What's Customary to Bring
Posted: Wednesday, December 23, 2020 8:16 PM
Joined: 2/16/2018
Posts: 299

I think I'm getting very close to my breaking point with DH and I see MC on the horizon.  It will break my heart and my budget to do this; but, I'm afraid if I don't, I will go over the deep end myself and need psychiatric care.  The stress of listening to him talk to himself and these imaginary people all day, along with being dressed as though he's going to the Arctic Circle, waiting for 'the guys' so they can go wherever it is he wants to go is getting overwhelming.  It's just taken an hour to get him to remove all these layers of clothes so I can get him to bed. 

But, my question is whether it's customary for MC that you bring your own furniture (or rent from them at $35/month), 4 sets of sheets, towels, 12 changes of clothes, 6 pairs of PJ's, Toilet Paper, etc.  I would expect one would provide personal hygiene products, medication, a reasonable amount of clothing, etc. but was a little surprised at some of the other requirements.

What has been your experience?

Also, if you had the choice, would you put your LO in a small care home environment (a home-like setting with just 5-6 patients), or a standard MC with many patients in a more institutional-type setting.  One is obviously much more expensive than the other; but, could it ease the transition from home to MC?  DH is losing the layout of our house and sometimes can't remember where the bathroom is.

Thank you for any experiences or opinions.

Posted: Wednesday, December 23, 2020 8:53 PM
Joined: 2/16/2017
Posts: 1288

Dear Wish,

When the time came I had to place my DH I had both options. The private home was very close to me but I was afraid it was close enough that my DH would try to walk home. They did not have the security that a MC facility had. My DH was not a wander but because the doors were open and not always guarded I decided the MC facility would be a safer place. I think it is important to make sure the place you decide to place you DH will care for him till the end and not have to make a move. The home I liked said they would care for him till the end. I was just concerned about the open door policy.

The MC facility I place him in was not to far from home and it had secure doors and 24/7 caregivers and a nurse on staff. My DH got the best of care from all of his loving caregivers. I was very pleased I chose the MC facility. He may have preferred the home. 

I think it may depend on the facility as to what you need to bring. My DHs room was empty so I had to get a twin bed and I did not have one so they loaned me one that was there. I provided all the sheets and pillow cases. I took down his recliner his TV and his nightstand and his lamp. I put pictures of all the kids and grandkids on the walls in his room and took blankets he would recognize. I took as much stuff from home that I could, hoping he would feel comfortable. I took down his cloths and replaced them as needed. I supplied his depends his slippers his tooth brush and tooth paste. A lot of times I would find other peoples cloths in his closet and it never bothered me as long as he was clean I did not care. So just dont take down his best cloths. You will find they all become one family. So I did not allow myself to stress over small stuff.   

It will all work out. It is a hard thing to do so be strong. Hugs Zetta  

Posted: Wednesday, December 23, 2020 10:13 PM
Joined: 2/2/2014
Posts: 6272

DWs facility  supplies almost everything  in the monthly rate and will supply and bill for other items.  We supplied clothing, pharmaceuticals, tootpaste she likes, incontinence supplies  and Pay for haircuts. I provide and deliver special food and pay for an extra caretaker 30 hours a week since covid lock down      Total cost is about $13,000 a month. That is for a single room with bath in one of the highest cost areas in the USA  ZIP 20895
Posted: Thursday, December 24, 2020 1:17 AM
Joined: 9/7/2020
Posts: 28

Hi Wish,

My dad entered MC in September.  It's a smallish facility with two wings of 16 residents each.  The only furnishings we needed to provide were a recliner, floor lamp and TV, since the bed, night stand and armoire were included with the unit.  Towels and bed sheets are provided by the facility, but we needed to provide the blankets and comforter. They required us to provide a large clothes hamper.

As for deciding on a MC vs a home-like setting, we knew any move would be hard and wanted to do everything possible to keep him in one place as long as possible. In speaking with the staff on a regular basis, it's clear they know how to handle his dementia.  I'm very grateful.

This was definitely one of the hardest experiences in my life.  I wish you well with your decision.

Posted: Thursday, December 24, 2020 4:58 AM
Joined: 3/6/2017
Posts: 2575

Before we placed dad, I toured a least a dozen facilities from the high end private pay only MCF, to the veterans home, CCRCs which could convert him to a Medicaid bed if he outlived his money. Some were government operated, some religiously affiliated, one was a community run non-profit and a few were parts of chains. Board and care homes don't seem to be a thing where we live so I did not tour one of these. Policies and pricing we all over the place. Once I had a short list, I was able to bring my mom to the top 3 contenders- which were very different in expectations. I suggest you tour when you can. 

IME, the most important piece to this is the training and retention of staff and the thought that went into care. 

My first choice was a state-run veterans home. It was a bit institutional and didn't have a specific MC wing, but the staff was warm and very experienced. The RN I spoke with touring was not only familiar with dad's specific ARD, she was able to discuss it without the judgement many brought to the conversation. And with the very masculine atmosphere would have been a way better fit for my dad than any other facility I toured. It sounds like your husband might be a good fit in a place with other male residents. Pricing here was on a sliding fee schedule based on income/assets. Families supplied clothing, toiletries, incontinence supplies and medication.

Mom's first choice was part of a CCRC. They had a tiered pricing for pretty much everything. In addition to the incontinence supplies, toiletries, and linens we were expected to provide they had a complicated menu of upcharges. You paid a base rate and then ala carte surcharges were added. Their MC units had furniture or you could provide your own with no difference in price. 

Families provided medication through their pharmacy and the MCF charged by the number of medications given per day. 1-3 pills/inhalers given once daily was the lowest tier. 4-8  or fewer  twice daily was second tier and third tier was anything more than that. Assistance toileting was second tier and incontinence care was third. Two person lift? Highest tier. That's a trick question- everybody is a 2-person lift for the safety of all involved. They seemed to be quick to turf their residents from the MCF to SNF rather than allow residents to "age in place" which is a euphemism for "die here"; other places will expect the family to provide more help as their LO enters the later stages of the disease. I expected bait and switch from this group, but dad wasn't accepted based on his diagnosis.

The place where dad ended up was wonderful. It was a free-standing MCF on the campus of a SNF. It was purpose built for dementia with separate wings and common areas. It was also thoughtfully run. Aides were assigned the same wing each shift and they had different days off so dad always had at least one familiar person available to him. The staff were well trained and paid a little better than most in the area. (I toured the staff parking lot and noticed their cars were a bit nicer and newer than some of the other MCFs) Pricing here was a single fee that covered all care. We paid for toiletries, incontinence supplies (they could also provide at nearly identical pricing) and meds. Had dad gotten to a point where he was no longer ambulatory or needed skilled nursing we could have hired additional people or transferred him to the SNF- most residents lived out their lives on-site. This particular facility is often thanked in obituaries which is often a sign of quality care. 

The place where dad lived offered a basic furniture set up and linens or you could bring your own. We created a story where the MCF was an upscale rehab ordered by the doctor. He'd been in rehab after a hospitalization and remembered vaguely hating the experience. We kept the furniture and added trendy linens from Target and some framed photographs of his favorite golf course. It ended up looking a bit like a Holiday Inn. A few of the residents had moved in their own furniture and created very homey suites.

There are downsides to bringing furniture. We did this for my aunt when she went to a MCF. She had some very nice things- one of them was a Stickley chest I'd always admired. She'd bought it near me and put it on layaway while her house was being remodeled into a year-round residence just before she retired. It took her a year to screw up the courage to tell her very indulgent husband she'd bought it. We used to go visit it in the showroom when she was in the neighborhood. The staff trashed it. Drinks were put on it, food was wiped off with commercial cleaners. My aunt would have been very upset had she still been aware.

A few days after dad died, I stopped by the MCF to clean out his room. I donated his clothing, linen and the large photographs and left with a single large box. On the drive home I passed the MCF that had rejected him where I saw a couple loading a U-Haul with a breakfront, poster bed and wing chairs and was glad for my little box.
Posted: Thursday, December 24, 2020 5:59 AM
Joined: 4/2/2018
Posts: 4029

Wish, I'm sorry it is so hard. This is a very good thread, and the replies help those of us who are not there yet. Thank you.
Rescue mom
Posted: Thursday, December 24, 2020 10:06 AM
Joined: 10/12/2018
Posts: 1882

The facility my mom had, everybody brought in their own furniture. The place provided a set of sheets and pillowcases, and 2-3 towels, changed weekly. If you wanted more, or better, you provided them, and the staff would change and wash them. Of course, some got gone, but not enough to be upset about. Getting an unusual or bright design helped, something not white. Or you could pay more for staff to change more often.

Paper towels, TP, soap, shampoo, all personal toiletries, equipment like walkers or wheelchairs, were residents/families responsibility. The facility cleaned 2x a week; if you needed any “spot cleaning” in between, (most people did), up to you to have supplies on hand. You could go seek staff out and ask for a cleaner, and they’d help out, but it could not be a regular thing.

A world of services and nursing aide-type services were available, you paid for what you wanted. Meds could be up to the resident, or they would administer and refill, at extra cost.

Posted: Thursday, December 24, 2020 7:32 PM
Joined: 2/16/2018
Posts: 299

Thank you all so much.  What a treasure trove of great info, tips, and experiences.

I get the impression the monthly fee is merely a down-payment.  Many more expenses accrue once the LO is moved in.

I contacted a home care agency and I am going to try a caregiver a few days a week starting in the new year.  Maybe that will relieve some of the stress and can delay placement.

DH has become very troublesome from about 5 p.m. to 9 p.m.  He becomes willful, hyperactive, fixates on one thing and will keep going back to it after I divert him, obsessive about the velcro ties of his shoes, just exasperating behavior.  

I have appointment with Neurologist next week, maybe there is a better medication to deal with this, maybe different dose, timing, etc.  He is currently on:

Trazodone, 50 mg for sleep........1 at bedtime

Depakote 500 mg, 1 in the morning, 1 at bedtime

Seroquel 50 mg, 1 in the morning, 2 at bedtime

Would this be considered a low dose; maybe there's room to increase dosage and change timing of doses so the effect kicks in around 5 p.m.???


Posted: Thursday, December 24, 2020 8:56 PM
Joined: 8/22/2020
Posts: 923

Wish there is definitely room to move on all of those doses, definitely discuss with the neurologist.. sorry you're having such a hard time.
Posted: Thursday, December 24, 2020 9:43 PM
Joined: 2/16/2018
Posts: 299

M1, thank you.  I will text the Neurologist Monday to get a head start on what dosage changes might be appropriate.  You know that old expression to be careful what you wish for.

I remember complaining that DH used to disappear to his room after dinner, not to be heard from until morning.  Now, I'm wishing to have those days back.

Horrible disease.  What a way to spend Christmas Eve.  Like you said in another post, I have a sixth sense this could be our last.....

Posted: Saturday, December 26, 2020 10:23 PM
Joined: 5/25/2020
Posts: 205

Hi Wish. It's awful isn't it how this disease progresses and you find yourself wishing for a previous stage, even though at the time it drove you crazy! For me, I often think I wish I could go back to him driving me nuts with the repetitive questions and how everything was my fault, not his - I'd hidden the TV remote, I'd lost the mailbox key, I was the one who was using different words. Now he can't talk at all.

Anyway, to your question. I think you can see from here, facilities vary widely. I did a lot of research before placing DH. I compiled a spreadsheet of 52 questions, taken from advice on here and also the Medicaid website. I was very happy with the place we chose. There was a single monthly charge for medications, which they got from a pharmacy, using my benefits. They provided TP, but everything else I provided: bed, dresser, armchair, linens/towels, toiletries. A friend and I set up the room really nicely, using a mixture of furniture from home, for familiarity, and a couple of new things, including a new metal bed frame that looked like ours at home. Each room had a private bathroom.
The staff were great, no concerns; however, it turned out they were not really equipped to deal with DH's outbursts, even though they had known about them. Long story, but I ended up moving him after 6 weeks, to another MC, having had to pay for 24-hour private care on top of the monthly charge.
This new MC has basic rooms, provide all the furniture, toiletries. They would have provided linens and towels, but I preferred to supply them. (Sometimes they are on his bed, sometimes not. As with sometimes wearing clothes that aren't his, that doesn't bother me. He's clearly being well looked after.) I'm happy with the decision. I would not have chosen it when I was first looking, because the rooms have a private toilet, but it's one shower/bathroom per six residents, and DH would not have liked that. Sadly, his EO dementia is progressing pretty quickly and, by the time we moved him, he didn't even notice.
Good luck.