MCF Didn't Work Out

Kenzie56

As some of you know, I placed DH 5 weeks ago at a private MCF at a cost of $7K/month. They told me it would be best if I did not visit for 4-6 weeks while he transitioned.  I was able to view pictures of him engaged in activities posted on their portal and was reassured that he was adjusting fine.  I started to see that he had the same clothes on day after day and was not shaved. For 4 days he was not wearing his glasses. I was paying for Level 2 care which included helping him shower, shave, dress and brushing his teeth.  Last Monday, I emailed the director a week ago and put in writing that he was in the same clothes for two weeks, wasn't wearing his glasses, etc.  They told me that they would look into it. I decided to visit him last Thursday.  Well, he smelled to high heaven, so I took him to his room to shower, change clothes, etc.  When he stripped down, his underwear and socks were covered with dried feces, which was also on his Jeans.  His toothbrush was dry and shampoo and liquid soap bottles had not been used.  So basically he had not been showered for 4 weeks!! I spoke to the nurse and she said he doesn't let anyone shower him or change him and that he even sleeps in his clothes.  I told them that the facility is a memory care only facility and they should have some "work-arounds" for residents like this. After I cleaned him up, I took DH to lunch and then brought him back and he cried when I left. That night I wrote a second letter of complaint to the director. I decided to pop in on Saturday and even after two formal letters of complaint, he had not had a shower since I was there on Thursday and was once again in soiled underwear.  He also had a huge bruise on the inside of his upper leg. On Sunday I got a call and was told he has 6 cuts on his arms where a caregiver had to restrain him...little detail on what exactly happened. I gave them the formal 30 day notice that his room will be vacant on or before the 23rd of November and I plan to bring him home the first week of November, after my cataract surgery. I am beside myself.  I thought long and hard about his placement and then felt guilty for 4 weeks...now I feel I betrayed him. I researched all the facilities around our area and felt this was the best one for his needs. I have a call in to a different Home Care Company than the one I used before.  Maybe if I pay for 40 hours/week, I won't have the revolving door of aides coming to the house.  Just thought I'd share my nightmare. Now I have to schedule a moving company to get his furniture next month and get him moved back home.  I still have not heard from the Director. This past month, I have had 3 gout attacks and my doctor said it is from stress since I don't eat sweets or red meat, weigh 110 lbs and don't have diabetes. After this past weekend's trauma, I am sure I'll have another flare-up. This black cloud has to move on.  Thank you for listening to my rant this morning.

mrl

Oh Kenzie,

My heart hurts for you. This is everyone's worse nightmare and biggest fear. I wish you could have just run out the door with him. There is good home caregivers out there and well under7K a month. You must be beside yourself. I'm sick just reading it.   

My prayers, Michele

Ed1937

Kenzie, I'm sorry. What are you paying $7,000.00 a month for? It seems like he could be living with a kid, and get as much help as he's getting there. Dried feces? That is just not acceptable at all. 

"now I feel I betrayed him". You have to get over that feeling. You did the best thing you knew to do after checking the facility before placement. He's lucky to have you in his corner. Things don't always work out the way we expect, but we can't take the blame for that. Doing what we think is right is the only thing we can do, and if things don't work out, we go back to square one. I hope you find a workable solution.

MaryG123

You didn’t betray him Kenzie, but the MCF sure did.  Please file a formal complaint with the state so others might not suffer the same treatment.  I’m so sorry!

Scooterr

Kenzie you most certainly did not betray your husband. You done what you thought was best, you done researched and you trusted the facility to do the job you was paying them to do. They dropped the ball ! I get so sick and tried, in fact pissed off of hearing of these facility doing this to our people and yes I said our people, we're all in this together. Kenzie  you had mentioned bringing in extra help at home for 40hrs a week that maybe something to look into. Kenzie I truly wish you the best and my heart goes out to you.

Jo C.

Dear Kenzie; it is hard to find words to address what you have shared; I am so very sorry and certainly understand how dismayed and upset you must be.  Kenzie, you have not betrayed or otherwise did anything wrong.  You have done the best you could do under the circumstances with the challenges as they existed. You researched facilites and chose what appeared to be the best setting and at significant expense.  You left no stone unturned in providing the items needed when he was admitted. 

Even though the facility protocols requested you to not visit for a period of multiple weeks, you still kept close contact and you did indeed note some failings re his clothing, lack of hygiene and eyeglasses and addressed that.  Then you were able to visit and found appalling lapses for which you are paying $7,000 per month; you addressed that.   From what you have written, significant care failures continued and appear unacceptable in multiple ways. NONE of it was from any lapses from you and you are indeed taking action.

It would be a good idea to contact the entity that does oversight monitoring of MC and NHs in your area and make a formal complaint.  The Ombudsman for your area can give you the contact information so you can do that if you wish.  These care lapses appear far, far over the top for any level of acceptable care including his being injured; they are lucky you did not consult an attorney. Cuts on his arms?   Not at all acceptable; no way to know the truth of the matter, but it does need to be reported to the oversight agency not only for your own holding the facility accountable for the dreadful lack of care for your husband, but also to help protect other patients who are remain in this facilities "care."  Hope pictures were taken of his arms.  Did you have any photos of this dirty clothing, etc.? Document everything in detail as you have done here and provide that with your complaint if you decide to move forward with that. 

Since you are taking your husband home; at least for the time being, and since you were paying $7,000 a month for facility care, I hope that you will apply some of that monthy fee to hire in-home care aide assistance. How often and for what care purposes will be up to you; this will give you some respite to help your own health needs or even the ability to sleep at night.

If placement does indeed need to be re-visited, you will have time to do some more research to find a better fit with adequate care.   This is NOT a failure on your part; things happen and you have actually risen to the challenge very, very well and are to be commended for all you have done.

Let us know how you are and how things are going.  We will be thinking of you and so hope all works out smoothly whichever way you decide to go.

J.

Kibbee

Kenzie56 I am so sorry to hear about the horrible lack of care that the MCF perpetrated on your DH.  I hope you are successful in bringing him home, and will use the money that would have gone to the MCF to buy yourself some caregiver assistance and respite time.

It seems like these kinds of stories are popping up here more often.  Spouses pay a lot of money to place their PWD in a MCF that they, in good faith, believe will keep their PWD safe, clean, healthy and happy, at the agreed upon price.  But then something happens and suddenly the MCF comes back to the spouse and says more money is needed for extra care or services. Seems almost like a bait and switch game.  The one that kills me is when the PWD in an MCF begins to wanders or fall, and the MCF tells the spouse that they need to hire a sitter to be with the PWD at night.  So now there’s the cost of a sitter, on top of the already astronomical cost of the MCF.  

I can understand why caregivers try to hold out as long as possible before doing a placement, and I can understand why some caregivers pull their PWD out of placement and bring them home.  

dayn2nite2

I do agree that whatever department oversees memory care in your state needs a report from you regarding his care.

Kenzie56

Thank you for your responses...I am reading them through tears. I did think to take pictures of the large bruise on his leg, his soiled clothing and underclothing, and his filthy bathroom. They have a portal where they post pictures of him daily in activities. I have downloaded all of them with date stamps to show not only his unshaven face, but also the same clothing and the bandages all over both arms. I kept a timeline of concerns and calls made, emails, etc., and attached it to the form for the formal grievances. I have yet to hear back from the director, but that is being documented as well. Kibbee, you are correct about the money. Shortly after he was placed, I was informed that DH didn't want a roommate. Their recommendation was a private room for another $1K!  What I don't understand is that all I have heard is that DH doesn't want a shower, or he doesn't want to change clothes, or doesn't want to sleep in his gym shorts and T-shirt. Is everything up to him? Aren't there any tools in their toolbox? Then they tell me how well he is doing and how he enjoys all the activities.  Real mixed messages.  

I will get a good home care aide that meets his needs even if it takes changing companies until I find the right one. I need help and I am determined not to give up. I will also take Jo's advice and contact the Ombudsman for our area as well as the corporate office. I did get a moving company lined up today and rented a storage unit to store the furniture in case it is needed in the future. I need to take a deep breath and power forward for his sake.  Thank you for your support - it gave me the focus I needed and self assurance that I did what I thought was right. What would I do without this community?

toolbeltexpert

Kenzie I totally agree with your reference to their tool box. Doesn't sound like they have one. My dw is doing some of those same behaviors. Sleeping in the same clothes not wanting to shower. But they keep trying sometimes they have success, I have been trying to keep my dw clean in between the sucesses. Several times I have changed her socks cause they smelled and I washed her feet. Today I washed her hair, they are constantly trying but in reality they can't force her to do anything she doesn't want to. It's been just over a month in this place. It's 3659 a month. I am lucky she doesn't act out when I leave. Today for the first time I took her out to leaf look and have lunch, I did that for me my heart breaks when I leave her every day and not visiting isn't in me. 

This is a case of neglect on the mcf part,IMHO.

That's good that you picked up from pictures what was really happening and acted accordingly. 

Sorry this is putting you backwards. 

Stewart

Nowhere

This is my husbands case, too. He can shower, but prefers not to, so he goes without. He declines help. He sleeps in his clothing because he’s anxious to change. I can get him to shower if I’m there for several hours. The workers in these facilities do not have that type of time for one to one support are not experts. They are hopefully high school educated graduates . The facilities are understaffed, workers underpaid for what they do, and there is little to no oversight by state agencies since Covid, In Oregon residential workers are not licensed. They simply required to have taken a certain number of hours in dementia care training. Is my husband safe? Yes, I hope so as he’s residing in a supervised locked environment and offered three meals a day and a morning and afternoon snack and hydration. The aides always know where he is and if he’s eaten. The activity director enriches the lives of those that elect to participate. Most sit or pace and do not engage in games or puzzles or crafts. It’s a horrid disease in a capitalistic society. Perhaps your husband would fair better in a smaller community like a family type group home? My husband was far too active and exit seeking for such a setting. Thankfully he is not incontinent except for occasional misses. If he were, I imagine he’d require medicating in lieu of combative clean ups.

Paris20

Kenzie, I’m so sorry that you’re going through this hell. I understand it. When my husband, diagnosed with AD almost eight years ago, had a stroke, my daughters and I had to find a facility fast. We had already done our research and there was a room available in a very highly rated facility. The cost is staggering but the care is good, as is the food. There’s entertainment just about every day for those residents who are interested.

They are always short-staffed and cannot truly accommodate residents in a timely manner. My husband doesn’t like to get out of bed in the morning. They try to wake him up, he refuses, so they move on. As a result, he skips breakfast and he has lost a lot of weight. I can get him up when I’m there but I don’t care to arrive before visiting hours every day, at the crack of dawn. Our doctor tells me to let him be because he’s dying anyway. Thanks a lot! My daughter has described the facility as the best of the worst. She’s right.

Nowhere

Paris20 wrote:

They are always short-staffed and cannot truly accommodate residents in a timely manner. My husband doesn’t like to get out of bed in the morning. They try to wake him up, he refuses, so they move on. As a result, he skips breakfast and he has lost a lot of weight. I can get him up when I’m there but I don’t care to arrive before visiting hours every day, at the crack of dawn. Our doctor tells me to let him be because he’s dying anyway. Thanks a lot! My daughter has described the facility as the best of the worst. She’s right.

Your daughter nailed it. Alzheimer’s isn’t clean or pretty. It’s just hard for everyone involved. In a facility or at home. 

 

JudyMorrowMaloney

Kenzie,

I went through a similar situation.  My DH also does not like to bathe or change his clothes and the "care" home he was in didn't do neither. This facility was significantly understaffed and would leave residents in their soiled clothes.  The staff sometimes would take 20 minutes to respond to someone who had fallen in the bathroom.   Plus the place was always dirty and the food was terrible.   Each month I would get a letter from medicare saying that my "co-pay" was going up.  I too felt guilty about putting him in such a terrible place.  I finally made the decision to take him home when a resident almost died because a defibralator didn't work! When I told them I was taking them home, they said they were going to go to court and get conservatorship over him.  I got a lawyer myself and a court order to get him out.  Its been rough and difficult to live my life since I haven't had any luck finding good help, but I believe I did the right thing.  I've gotten over my guilt because I know I did what I thought was right at the time.  It's not my fault that the place was understaffed or just plain didn't care.

ImMaggieMae

Kenzie, I am so sorry you are having to deal with this. You did the best you could with the information you had at the time. I’m glad you are getting him out of there and filing formal complaints. That MC sounds horrible and dangerous. Like others have posted, this kind of thing happens all too often. Instead of LO being cared for by “professionals” they are too often being neglected by understaffed and undertrained workers. Nobody should have to go to a facility daily to make sure their LO is getting the correct medication and is being fed. Clothing and facilities should be clean and hygiene should not be ignored. 

Judy, having to fight that facility to get your LO out sounds like a nightmare. It must have been incredibly stressful for you to have to hire a lawyer and fight them in court. I feel so sorry for what you had to go through.