Update after 9 months in MCF

David J

I am reading so many posts recently about placement; considering it, planning it, or having done it. We went through that last September, and maybe our experience will be comforting to those who are dealing with it now. 

I placed my wife in MC for a respite one week before I had minor surgery. I had researched local facilities over the previous two years, and put her in the one I liked the best. I didn’t tell her we were going, I just packed her a bag and took her. When we arrived I reminded her that I needed an operation, and told her she would stay with my friends until I recovered. One of the staff then took over and led my wife away to the activities room. It all went smoothly. I didn’t see her until the night before my procedure, but I got daily reports of how well she was fitting in. They and I had expected difficulty, but she seemed to enjoy the more stimulating environment of the MCF. 

After my procedure, I needed some recovery time, without strenuous physical activity, so I had arranged a one month stay. By week two, I realized she was less stressed, safer, cleaner, eating better, and getting social stimulation that I could not provide at home. I had anticipated that this might be the case, and was prepared for it. I made the placement permanent. 

The first few months were complicated by medication issues. The medical records systems that doctors and hospitals use only share info within the system. So independent providers, or providers in different networks cannot read or add notes in each other’s systems. I’ve related those incidents on here before, and the details aren’t important. Medical communication is extremely important, particularly if the providers associated with the facility are not acting as PCP or the PWD is seeing specialists outside the facility. We ended up using the facility’s PCP, but keeping her existing Psych and Neuro. I still coordinate all of her medical care, not the MCF. 

Her condition has worsened since she was admitted. She can no longer perform any ADLs, even with assistance. She is double incontinent, though if taken to the toilet at the right time and placed on the seat, she will go. She is much less verbal, but that has gone up and down with med changes. She is on a lot less medication than when she entered MC. She, like many PWDs spends her time walking. She is beyond most of the group activities provided by the facility. Working with her psychiatrist, we removed all the memory drugs with no perceptible change. We reduced antipsychotics and antidepressants and tried different ones. We did this over the whole nine months, and now she hasn't had any med changes for three weeks. 

She had three ER trips in he first month, related to the medication errors mentioned above.  That settled out until month 7 when she had 2 Grande Mal seizures. The neurologist could find no cause, other than progression of AD. They put her on anti seizure medication, which also has a calming affect. Throughout all the medical issues, the staff was professional and caring, getting medical services and transportation to the ER, sending medical files with her in a he ambulance, and following up afterward. Note that they are Assisted Living, not a Skilled Nursing Facility.

Through all this, my mood and attitude had a lot of ups and downs. At first I concentrated on getting my procedure done and recuperating. At the same time, I felt the reduced caregiving duties as reduced stress, more freedom, and more time for myself. As the respite period came to an end, and I made my decision to keep her in MC, I realized that she was never coming home and that I was alone.  I missed her, I was lonely, I was wallowing in the past and in the future plans that were no longer possible.  It was not he release from the heavy lifting of 24 hour caregiving that made me realize that my whole life is different now. I was very depressed, but thankfully not suicidal. If not for the help and support of good friends and family, ad well as medical intervention, it could have been very bad.

I miss my wife, I love my wife, and I will provide care for her the rest of her life. I don’t have a romantic life, and don’t think I ever will. I reported a few weeks ago that I took my wedding band off. Well, it’s back on.  There have been many posts on that subject, so I’ll just leave it there.

I have started to get back in to hobbies and interests that have been dormant for years. These things bring me some joy, but everyday there is something that I want to share with her and it hits me like a brick that I can’t. 

Many have called this place purgatory, because we are just waiting to see which way it will go, and when. 

JoseyWales

Thank you so much David for sharing. I'm glad to hear that the medication issues are being resolved. It sounds like she settled in. I'm also glad to hear that you seem to have made it through the really rough times, and had the support of family and friends.

Last January DH had a grand mal seizure at home, which resulted in a 3 day hospital stay and another seizure at the hospital. He's on medicine for that now, too, and no reason could be found for the seizure. I don't know why I hadn't heard of dementia causing seizures before then, but since I've heard lots of the posters here mention that their loved ones also had seizures. A little research tells me that seizures in people with dementia isn't uncommon at all. 

Quilting brings calm

Just an observation on seizures.  My younger son has epilepsy - defined  as two or more seizures with abnormal EEGs.  Nothing shows up on MRIs that have been taken every few years.  There’s no abnormalities to fix.  He gets the grand mals, and is considered stable on medication.  We don’t even know what his triggers are, other than forgetting to take his medication. There can be break through seizures for that, for fevers, for stress, lack of sleep, etc.  Flashing  lights give him headaches, but not seizures.  My point being, do not get upset with the doctors for not knowing what’s causing it or for not preventing it.  If the medications work, great.  If not, there’s plenty of medications that try. 

However I will say this as a mom of an adult child- -  those grand mals  are frightening to watch, especially if they don’t stop on their own. 

jmlarue

Thank you, David. I am one of those who is in the pre-planning stage of placement. Like you, I am facing the possibility of surgery and a month of recovery time which will require placement for my LO sooner than anticipated. I am also trying to prepare for the possibility of placement transitioning from a respite stay to a permanent placement. The one thing I find most concerning is the seemingly common experience of medication errors/mismanagement after admission. Do you have a suggestion on how we might avoid the facility's physician from countermanding the care plan and medications ordered by our LO's Primary and specialty doctors? How does one go about assuring that the facility physician cannot arbitrarily change/alter prescriptions and treatment plans without prior approval of the POA caregiver?

I wonder, too, about the cognitive state of your LO on admission. Did she still recognize you as her husband when she entered respite care? In reading of other caregiver's experiences, it seems that the person who has forgotten the relationship with their caregiver is more likely to adapt to placement and not regard it as abandonment by their spouse or children. This is the one thing that prevents me from considering placement unless/until it becomes an unmanageable crisis. A lot of posters come here bemoaning the fact that their LO no longer recognizes them. As much as that hurts, I think I would find it to be a blessing if it avoids the horrific turmoil for everyone when placement becomes necessary.

I share your sense of loss. Our 54th anniversary is coming next month. It should be a joyous occasion. Instead, I'll be left to grieve the living death of my best friend and the great love of my life. Dementia has stolen everything from both of us. The helplessness and hopelessness of this living hell is quite overwhelming. It tests me and tests my faith in a merciful God on a daily basis.

May flowers

Quilting, I also have an adult son with epilepsy. I hear you about the grand mail seizures - scary stuff. We never did find out what the triggers are, but he has been seizure free on meds and a ketogenic diet for several years now. He recently was able to cut back on meds to very little daily now, and things go well as long as he stays on a relatively low carb diet.

Ed1937

David, thanks for the thread. It seems that the norm is that people adjust easier than we expect. It's the caregivers who seem to have a harder time with placement. Of course there are always exceptions.

Jeff86

Thank you, David, for a very thoughtful and searing post sharing your placement experience.  I am sorry it was such a difficult transition for you, even as your DW adapted relatively easy, and I’m really glad to read that you are in a better place now.   

I had major surgery 1 1/2 years ago, and rather than respite care I arranged for aides 24/7 for a two week period.  For my recovery, I moved into a guest room, and that has become a quasi-permanent arrangement given our different sleeping patterns, DW’s incontinence, and so on.

DW has been late stage six this whole time.  In idle moments, I wonder if it was the right decision—if DW would have benefited from the greater social interactions and activities at a MCF.  I didn’t have the heart to do it then, and I guess I still don’t.  While DW mostly doesn’t know that I’m her husband, she thinks I’m somebody very positive for her and tells me, most days, that she loves me.

My DW is gone, cognitively.  I no longer tell her what’s gone on in my day because she can’t take it in, and can’t respond.  I miss her terribly.  But I am not gone, for her.  Not yet, anyway, or not entirely.  Maybe that’s my bar for placement, unless medical issues overwhelm these other considerations. 

David J

Thank you all so much for responding and adding your experiences. I witnessed my wife’s second seizure and it was the most upsetting experience of my life. One second she was standing in front of me, the next second she hit the floor with a sickening thunk, splitting her scalp open and bleeding profusely. It was terrible. 

It is had to know who she thinks I am. The concepts of marriage, husband and wife are way beyond her now, but she is comfortable with me and takes my hand. Although, when she walks, which is all the time, she grabs other peoples’ hands to walk with her. She seems pleased to see me, but sometimes doesn’t recognize me when there are a lot of people about. Every once in a while there is a spark of recognition, or memory. So we will continue this semi relationship as long as it lasts, and I am thankful for it. 

billS

Dear David, thank you for your post. I placed my wife late January and thankfully she also adapted right away. I visit every other day and try my best to monitor here condition and care. When I visit she seems to recognize me as a trusted friend, and I spend the time treating her to shoulder massages, foot baths and pedicures, or sharing special treats to eat. 

Lately with staff shortages there are fewer activities provided and lower staffing levels, and I see more boredom among the residents. I hate to see that but at the same time I know that she is still safe and well cared for, and I know I made the right decision since I could no longer keep her safe at home. At the same time I miss her terribly but know it is the pre-dementia person I am missing, the one this cruel disease has taken from us. 

You mentioned reducing your wife's antipsychotics. My wife's doc suggested the same and so far we have not seen any adverse effects except possibly increased insomnia so we have added some back to see if that helps. Anyway, best of luck to you and your wife as you travel this path.

Gig Harbor

I am moving my husband in 4 days. It seems surreal but I think he will do well. He no longer realizes that where we live is our house and he thinks other people also live here. I have to say it is sad but I am tired. We have been married 52 years and unless we ate out or with friends I have cooked every single dinner. He refused to learn to cook as well as do other tasks. He would always say “but you do it so well”. I did do everything well but now I am tired and honestly looking forward to just taking care of myself. I know I will miss him and the house will seem empty but I miss who he was not the man child he is now. I will not miss having to be on alert for him walking out of the house or taking things apart or breaking things.

Grandx7

I greatly appreciate all of the information this site provides.  I have not read or posted for many months as I have just been trying to cope with the massive changes my DH has undergone in the last 6 months.  I am a retired RN, thought that I could do this at home with helpers but realized last week, with the insistence of our family, that this disease was taking us both down.  My DH is said to be late stage 6 or if you follow the 3 stage chart, late stage.  He's only 74 but looks 60.  We just had our 44 anniversary but he had not idea of the date or its meaning.  He also asked frequently whose house he was in, stated he wanted to go home, and asked our youngest son who his father is.  He became a serious flight risk day and night.  All doors have deadbolts on them, windows have locks and boards to secure them if he opened them and locks on the gates.  In spite of this, he was able to get out back and proceed to jump the fence - in a 5 minute period of time. Fortunately, he had his cell phone with him (he no longer knows how to use it ) and we were able to track him a half mile away.  It was terrifying.  The next day, I had to admit him to a transition facility to try and get his meds stabilized so I can have him admitted to a memory care facility.  Our kids and I have been researching placement and finally decided on one today.  His meds are not stable after 5 days.  My heart is breaking with him being away from me.  We can't visit him until he is medically stable.  The most difficult part of this is I feel like I have failed and that he feels like I have abandoned him.  The staff tells me his continued behavior of exit seeking, pacing and not sleeping is due to the advanced state of his dementia, not that his feels like we have just dumped him there.  He has FTD, AD and VD.  I find myself crying throughout the day but I have much less of the constant anxious feeling when he was home, trying to escape.  I was told that yesterday, he told the staff that he was in Hawaii and had been there for 9 weeks.  That does help a bit that he continues to be that out of touch with reality.

Thank you for letting me vent.   I pray that God will take him quickly 

Crushed

Gig Harbor wrote:

We have been married 52 years and unless we ate out or with friends I have cooked every single dinner.

I miss cooking for DW so much.  She needed a homemaker and I was the best one available 

M1

Grandx7, keep us posted on how he does.  I went through a very similar hospitalization/placement in March.  Will be thinking about you.  It sounds like you did everything you could--this is not a failure on your part.  You have just had the terrible day to day burdens lifted from your shoulders and it will take a long time to adjust--right now you are probably just realizing how difficult everything had become.  I remember being so surprised at what a relieved feeling it was not to have to hide the mail, for instance.

Gig Harbor is placing her DH today I think.  I started a thread for her.  We do very much want to know how it goes.  Will be thinking about you Grandx also.

Joydean

Grandx7 just letting you know I will be praying for you and your family on placement.