My 82 year old dad was recently diagnosed with dementia. He was in the hospital for 8 days and then transferred to a very nice memory care facility. He calls me every few days and asks to come home. He says it’s a “nuthouse” there and everyone is crazy. He sounds so rational when he calls. He also sounds like a child and it makes me feel so incredibly sad and guilty. Prior to going to the hospital, my once very clean and well dressed dad stopped showering and changing his clothes. He was eating cold beans and chili out of a can. His refrigerator was full of rotten food. He left his propane on and almost killed himself. Luckily, I stopped by and shut it off. He was so messed up he just stood in his kitchen in his underwear unable to say multi syllabic words. When he finally went to the hospital he was hallucinating, but still sounded reasonable.
I know he’s safer, healthier, cleaner, and better off, but when I hear him beg to come home I don’t know what to say. I can’t go see him because of COVID restrictions. He can’t live with us because of his dementia. Anyway, what do I say to him? What can I tell him to reassure him he’s in the best place?
I used to tease my bro. He was in better mental shape than many at the assisted living. He would complain and tell me of incidents and we finally decided he was in a 60s commune for the aged. Always an issue, always a community meeting, always a bicker with sides taken, and etc. He formed friendships. He made his way through it and said "It's like when I was younger and in the Army. I didn't like it, but I was determined to make the best of it". And he did.
You will have to come to some gentle acceptance for yourself first. Then tell Dad that you are so sorry, but he cannot come home, that this is home now for him, and you will visit when you can, and you hope it will get better for him.
There is no answer to the end of life when things are taken from us one at a time, our balance, our abilities, eventually even our minds. It is sad and you have a right to feel sad. But you didn't do anything to anyone, so guilt is out of the question. Not an option.
So sorry for the hurt for all.
I'd also consider that sometimes people who have dementia say that they want to go home, EVEN IF THEY ARE IN THEIR home. So, bringing him into your home may not change that. He may still be very restless and think you and your family are crazy people. lol Delusions are common.
I'd try to come up with some things to say to him that may appease him. With my LO, she grew comfortable rather quickly and thought of her place as her own apartment. She liked it a lot. But, before then, when she talked about home, I'd say that I had to discuss her progress with the doctors, had to get insurance forms completed, filed, processed, you know paperwork, but, all would be handled in time. Just hang in there and enjoy the good food and service. Of course, she would forget, so, I'd have to repeat it. I'd keep in mind that often the person with dementia is not being persistent when they ask questions, but, they have forgotten that they already asked it a dozen times.
I'm not sure what type of activities they have due to covid at his MC, but, later on, if covid is resolved, he will likely have more in the MC to distract and entertain him.
When he calls tell him..
"Dad we have to wait for the Doctor to tell us you can go home"
or
"One of the medications you are on has to be given by a Nurse and they have to make sure you are OK after you take it"
or
"They are working on your house to make it safe for you when you come home, it might take a little while"
What he really want when he says he wants to go home is..he wants to know he is safe. Tell him.."Dad you are safe where you are, we want to keep you safe because we love you"
Just keep telling him you love him, he is safe.
You really can’t “reassure him” because his desire to “go home” is happening because his brain is no longer able to assess and use facts to deal with his feelings and needs.
The sadness in this is overwhelming. I’ve cared for two generations of a loving, crazy, hardworking, wonderful family, and now with the last living relative. Hearing her literally crying for her mother (my grandmother) would cause waves of sorrow for all of them that I didn’t realize were even still after 50 years there.
But MANY caregivers deal with this particular symptom, and out of your love for your dad, you will too.
So in short, say whatever occurs to you in the moment that he asks, that maybe a comfort to him. He won’t remember, so he won’t hold it against you.
I haven!t seen my Oldest and Dearest since March 11. She has survived Covid (at 91!) and will be having her 92 birthday in a few weeks, and we won’t be together for it. Life is very hard just recently for all of us.
MCs love to tout activities, socialization, cleanliness, and nutritious meals. When you are old and losing your memory, you want familiarity and home is where they know (an irony that MCs don’t like to talk about). Activities also become hard them because they get tired easily and cannot follow directions. So, they end up staying in their rooms watching TV or sleeping or staring at the walls. Fortunately, they can do all of these things in their homes - with a caregiver who can cook and clean after them.
I personally would not want to live in Memory Care. JMHO.
But home caregivers who do hands-on care is about $30 an hour.
If you pay private--someone who does not work for a facility--they can claim to fall in the home and sue the estate, and you have to do their taxes. It's called a nanny tax.
Family caring for their own is best.
Too bad he can't live with you.
GUILT should never be part of the Care Equation. Guilt is never positive and never productive, LEAST OF ALL during a pandemic.
Good quality residential care is NOT automatically easier than in home care, but it is different. If my LO were living in my home right now, I would be JUST as concerned about her care as I am now, but I would have FAR FEWER RESOURCES to provide for her needs and monitor her health.
NO ONE who is a caregiver should EVER “beat themselves up” for having to make hard decisions. It’s part of the job.
There's nothing you can say as he doesn't like it where he is. I'm sure it does seem like a Nut House and he's unhappy, scared and lonely.
He shouldn't have to live his last days on earth like this..
Facility's can look very nice but they aren't!
There's no place like his own home.
I doubt he would be better off at a Facility especially at this time with the Covid.
You might let him go back to his old place where he was living and turn off the gas and only have his use a microwave. You can have his groceries delivered.
Install Cameras at his house where you can check on him..
Call his Insurance and see if you can have a Home Health Service go by to help bathe him a couple times a week.
Go by once a week and clean out the old food in his refrigerator.
Purchase easy things for him to fix and eat.
He'll be happier In his own place eating a peanut butter and jelly sandwich or a can of room temp beans then where he is.
Rsthef he's in his own place or living with you, You could use his money to have a Caregiver come a couple hours a day.
Dad's Insurance will pay Home Health to come to your home every week for help with cleaning him up.
They also hVe Day places your Dad could go to then back home or to your house to spend the night.
You need to remember who took care of you when you were a baby til you got married.
It's time to reciprocate.
Minimum, you should take him out and let him come to your home during the Covid!
If you do decide to leave your Dad there, you should at least install cameras in his bedroom.
Praters you really have done all you can and not just what is convenient.
He was a sharp dresser. Well groomed. Always smelled nice. Now I have to tell him to shower, and change clothes. Does a horrible job shaving. Sometimes he’ll come out of his room with everything mismatched. Not a bother. Other times his shirt is backwards or inside out. I just point out it out, and we both have a good laugh.
He used to help around the house. It got to the point all I asked him to do is change out the dogs’ water. He could never remember to do that though. Now all he does is put away the washed dishes, then proudly announces he’s cleaned the kitchen.
He needed help sorting his pills. I put them in boxes with the day’s labeled. Now he has trouble tracking even that so I sort things in little cups daily.
It’s hard. I feel alone. His temper can be short when he doesn’t grasp something. It’s frustrating for him. Even more so for me. He’s fallen several times. But overall, he’s happy. I’m happy. We’re both happy. It’s a lot of work, and not everyone can take on the care of a parent.
But I agree with some of the other comments, your father may not need MC, just a helping hand to keep him on course. If you can afford a caretaker, and added responsibility, bring him home. I’ve visited these places. I think this is also one of the reasons I haven’t put him there.
Luckily he can afford 24/7 care in a small 1-BR apt. near us. He’s declining cognitively, but doing so much better in every other way. For us it was the only choice. His CG now focus solely on him and he’s thriving. I pray you will find a solution that will work for your LO.
To the people who say a MC unit is a risk, so is being at home with you. My dad fell out of his hospital bed and broke his femur a week after it was provided by hospice, this speeded up his death.
She is lucid but I think that’s funny.
I tell her she has a home to come back to when if she improves. At least she doesn’t have a feeling of permanancy.
When she gets delusional and starts asking about when I'm coming to pick her up, I remind her that she has entirely too many health issues for me to be caring for her at home. I'm simply not qualified, mother. Just her wheelchair alone prohibits me from taking her here to visit, never mind to live.
You can also let your father know that it's 'doctor's orders' that he live where he's at, and that you will speak to his doctor the next time he has a scheduled appointment. But until he gives the okay, dad has to stay where he's safe and cared for properly.
I know it's not 'fun' to hear the complaining and asking to come home, it's really not. In fact, it makes me not want to speak to my mother even more so than usual. But as far as 'guilt' goes, try not to take on that useless and self-inflicted emotion which serves no purpose. Our folks are in a place where they're attended to 24/7 by a caring team of individuals. They're fed, entertained, and catered to, which is more than most folks enjoy in their old age. It's more than I will get to enjoy in my own old age because I won't have the funds to afford an ALF.
Keep reminding Dad he's safe and cared for, that you love him, and will see him as soon as the covid restrictions ease up in his ALF.
Best of luck!
someone posted the memory care facilities are dangerous and get sued all the time. That statement can go for all types of facilities, child care, etc...You can tell if the memory care is a good fit. It’s not hard to check violations and complaint records. I’m not sure where that particular poster lives, but in Texas, in home care for someone with dementia is very expensive... 15,000.00 per month for full-time care with 8 caregivers coming in and out.
IF HE ISN'T TRULY READY FOR A LOCKED MC: Keeping him in an environment meant for people with moderate to advanced dementia may deprive him of a chance to form meaningful relationships with other seniors navigating dementia. If he was only recently diagnosed, and hasn't been trying to elope you may have the opportunity to transition into a less restrictive environment where he can meet and interact with other seniors who are more likely to relate to him. It may also lead to hopelessness and depression. If a person is not as advanced as the other residents in the memory care, he may be forced to stare at his eventual decline all day instead of participating in relationships and activities that would be more beneficial. I would suggest a trial transition in a discussion with the Administrator of the memory care. He would hang tight in the memory care for at least 30 days while the transition to a less restrictive environment is tried. Start with taking him to eat a meal with family in the AL environment for a few days, then add having staff bring him into the AL setting for one activity per day and the one meal with family. Have him review and choose activities for the week with you during a visit. If he is able to complete the sequencing necessary to read and chose one activity per day and possibly choose a meal selection as well - he may be able to successfully transition into a less restrictive environment until he truly needs it.
IF HE IS READY FOR A LOCKED MC: Every senior diagnosed with dementia has trouble coping with new situations, as we can all imagine. If you are struggling with retaining short term memory, every face seems new longer and every aspect of the day feels foreign longer. This decreased coping is why I suggested a transition time period above, and I will suggest a transition period in this case. In my experience the first 30-45 days are the absolute toughest on everyone. However, there are some things that can make it easier. First: Much a baby, a senior with dementia reads other people better than you think. Timid Body language, unsure tone of voice and obvious anguish are all signs that we are not safe and have to go! So you have to "fix your persona" at the door. Always appear with the same mannerisms you did in his home. Fake it til you make it! Call his new home the same thing you did when he was at home. If you are on the phone with someone, you would say "I stopped by Daddy's to visit for a minute on my way home" or if talking to your dad - "Dad, would you like to lay down in your bedroom or stay in the livingroom and watch tv a while?". In addition, ask questions about new procedures or even your father's condition in private away from your father. If I learned anything, it is that a person suffering with dementia suffers a long drawn out battle with dignity and self worth. If you can do anything champion his dignity no matter what.
I would say, "Yes, you can come home. We need to get your room ready." Fibbing or outright lying? Yes. Although with dementia, he will feel cared for IN THE MOMENT, and the moment is all he has, over and over again.
(one way/) The way to relieve guilt is to feel through it. Let it speak to you (listen to it), respond to it with loving kindness. The 'trick' is not to push it away or down. You need to let it go through you, with affirmations, as you release it.
Learn to 'couple' the feelings of guilt with compassion. This is what you are doing for and with your Dad, being compassionate. Whenever those guilt feelings (and grief) come up, understand it is grief of the loss - both your loss and his. Practice association other feelings when guilt comes up and the guilt will transform. Important to be with it. Knowing it is a tremendous loss to you and it hurts. I hope this helps.
My mother use to say the same thing about the other memory care residents and when the male nurse heard mom say that to us he said, "Oh, she thinks that and she fired me twice already today!" 😁 She thought she worked there and was his boss.
And a few days later she had organized a group of the residents and they were going to throw the large dining table out the huge floor to ceiling window so they could break out of there. That window looked out to the beautiful enclosed garden area that had 2 doors, that were unlocked at all times so they could walk out at anytime to enjoy the garden area. Did Mom think she was thinking right and the others weren't? Yes she did think that.
There are just something's the brain can still handle but others not, on a downward decline.
You just have to know you made the right decision, even though it hurts. He is safe now and hopefully will adjust.
Keep letting him know how much you love him. And how nice he looks so neat and clean, to have meals cooked for him, etc.
Playing calming music or happy music is also nice. A lap pet (robotic) for seniors is wonderful. My husband, in mid stage Alzheimers) loves his furry robotic dog. It's his buddy! Hopefully the home would allow that.
Mom liked it when we took a big cake and ice cream for everyone, so it was a party she was giving. All approved in advance. Don't know with the virus if that can be done now.
And always remember it is ok to fib. A little- less- than -accurate explanation followed quickly with a change of subject often works.
"Sorry, Dad, you can't go home today, the exterminators are coming tomorrow. Let's go see what's blooming in the garden."
As for guilt...the only thing you are guilty of is providing a best case scenario for your father. Nothing to be guilty of there! This is all painful enough, don't add to your burden by piling guilt on top.