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Our daughter had a national tennis tournament out of state, so we had to leave Doc for the first time ever at a facility for respite care on Oct 19. They had a 5 day minimum and it cost $1175. At the end of the 5 days, the facility told us they love him and think he’s a great fit. We decided to keep him there, gave them $2000 and they accepted him, “Medicaid pending.”


My husband has had an extremely hard time with this whole process, literally breaking down many times sobbing and broken over “ripping dad from the comfort of his home” and “speeding up his demise.” Doc appeared to get worse - we picked him up to bring him over when we got back that Monday and he was all shaken up, not shaven, disheveled, stuttering and seemingly more confused than ever. Made my husband feel like he was killing his father. We’ve brought him back nearly every day to spend a few hours, have dinner, be comfortable, shower and do his laundry. We get nonstop calls all day long asking when we are coming, over and over, as if he hasn’t spoken to us at all. My husband has it the worst, his dad calls him constantly, and has a heightened sense of responsibility toward his dad since his mom died in ‘98. Dad has relied on my husband for just about everything for over 20 years, and now more than ever he is helpless. Found out that I filled out the wrong application, that I had to redo it for nursing home care (I had applied for general Medicaid because he was still at home), and it’s been over a week we’ve been waiting for an answer. In the meantime, Doc has spent almost every single day he has been there in the front sitting room by the door, with his down coat on, waiting for us to “come get him,” and has been found twice outside leaving on foot with his jacket on. It’s worth noting it’s freezing in Michigan where we live. It’s also worth noting the place has a code to get out that was posted at the door (and Doc is still crazy smart even though he has dementia). According to the sign in/out book, Doc is pretty much the only one that comes and goes, certainly no one else comes close to the frequency he does.


Our first care meeting was a few days ago, and I thought things were looking up, it was suggested and I agreed we should keep him there so he can try to get comfortable, bring comforts of home and photo albums to distract him. He had already been found once outside (just a few steps from the door), and that was discussed, didn’t seem like a huge problem. Yesterday, of course during Doc’s normal “witching hour,” we get a call from the nurse who says he got out again, and this time they took his jacket away. When he was at home with us, “witching hour” refers to the NONSTOP back and forth, up and down, turn every darn light on in and outside, repeatedly looking and asking where is everybody (husband and kids are at tennis daily until late, so I’d be home working and watching Doc), but he never went outside. Later in the evening while he was still here for dinner, the head nurse called to say he’s not a good fit, they have to check on him every 15 min, don’t want to deal with “what ifs,” and they can’t have him. Feels like a dead end. My husband says they’re not getting paid enough to deal with him and is devastated. He’s obviously an inconvenience to the administration though the nurses all say they love him.


Since the first day, Doc thinks he is back at the plant (he was in private practice for many years, then later worked as a doctor at the GM and Ford plants doing occupational medicine, looking over nurses in a similar setting). And he frequents the hallways the same as he did as a doctor, the nurses all treat him with deference, even talk medicine with him to join him in his world. He has complained many times to us that everyone else gets a break and can leave but they won’t let him go home. They staff, for the most part, been wonderful. How do I approach the admin? We don’t want to send him to ER but can’t bring him home. Such an exhausting process.

It's a fact of life that many people with dementia spend a lot of time trying to leave their facility, I'm surprised the nursing home doesn't have a strategy to deal with this. Residents at my mom's NH all wear a bracelet that sounds an alarm when they linger too long in close proximity to exits, I think it may also disable the mechanism that unlocks the doors so they won't open. You should ask for a care plan meeting to go over strategies for a successful transition.

I think that bringing him home with you so often is not as kind as you think, it is preventing him from settling in at his new home and making connections there. I would eliminate the outings for a few weeks and visit him there instead, it may be more inconvenient but short term pain = long term gain.

Also, speak to the doctor to see whether some anti anxiety meds may be helpful - I'm not saying to dope him up, just a little tweak to help him feel less panicked. .
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CaringForDoc Nov 12, 2018
Funny you mention bracelets, Cwillie. The first time it happened, we were told they reported him to the state and would issue a bracelet. Then when it happened again yesterday, the nurse told my husband they didn’t have such bracelets and the facility was not set up to accommodate Doc. She suggested he be kept in a locked wing? No place we visited had such a thing. I completely agree that we need to allow him to get in a rhythm. It’s been hell on earth doing it the way we have, and I only have gone along with it because I think my husband is sorely grieving the loss of his dad. I’m trying very hard to keep my question practical, but the emotional aspect of this monster disease is killing me.
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I've been thinking about this as I go about my morning routine and it occurred to me that the nurse recommending a different facility truly may be trying to do you a favour - as much as the staff profess to "love him" as CM points out he is not at present a good fit. Having somewhere safe and warm with 3 squares a day is not always enough, at our local NH I've despaired at their inability to provide any kind of joy or meaning for those with dementia. A "locked unit" envisions scenes from One Flew Over the Cuckoo's Nest, but facilities with good dementia care are nothing like that and can offer meaningful activities that greatly enhance their resident's quality of life. Of course the sticking point is finding something that accepts medicaid and is within a reasonable distance from you, but don't let distance alone be you deciding factor, the more content he is in his home the less you will need to visit.
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I understand there is a lot of emotion and stress here. Your husband sounds about to crash from feelings of guilt and anxiety. He doesn’t want his father to “be like this” and that’s totally understandable. It’s difficult for all of us to accept.

I can only comment on what I read. After putting Dad in the facility, you’ve been bringing him out very frequently. He’s already confused and popping him back and forth probably isn’t helping. I know your husband probably feels better having his dad at home, but when he sees how confused he is, it probably makes it worse. I have related before on this site the time my husband and I went out of town for Thanksgiving and I asked one of my mother's friends if my mom (with dementia) could spend the day with her. It was awful. Mom had no idea where she was and concocted wild stories. She worked herself up into such a state they had to 9-1-1 her to the ER. I never took her out again.

But having written that, there is no excuse for Dad to be in the physical condition you say he is. My mother was always clean, with clean clothes and a clean room. That would make me consider alternate placement. As others have written, if he tends to wander, he needs to be in a locked unit. They started my mom off with a Wander Guard and she cut it off twice. I felt much safer with her in the locked unit. Can you call a Care Conference and ask for guidance from the staff who cares for him? Those meetings are documented and everyone involved attends so everyone is on the same page.

Finally, Dad may be picking up on his son’s upset and anxiety. Just because a person has dementia doesn’t mean they are devoid of feelings and emotions. Your husband may benefit from a dementia support group, speaking with your religious leader, or even therapy.
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This sounds more like an Assisted living attached to a memorycare/nursing facility. I have never heard of a NH not being a lockdown facility. Very hard to escape. Even in Moms AL the fire doors had alarms. I agree, Dad needs more care than the unit he is in can give. He needs to be in the lockdown unit where he will be monitored better. He is only going to get worse.

You taking him out everyday and bringing him home is very confusing for him. I am surprised the Head nurse didn't say something. Dementia patients do not adjust well to change. You have to allow Doc to get used to his new surroundings and the staff. You tell him this is his new home. He will make friends and have things to do. Him wanting "to go home" is common in Dementia patients. But home maybe from his childhood home. I would also lose the phone. Especially if ur the only people he calls. Tell him it got lost and you will try to track it down.

I know this is stressful to your husband. This is an awful desease. Its no ones fault that Doc is like this. You never know what is going to happen. But, at this stage Doc needs to be safe and where he is now is not safe. It is no more what he wants but what he needs.
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He's not a good fit. This is a Nursing Home and your darling FIL, who sounds the loveliest man ever, has nothing wrong with him except what sounds like galloping dementia. He needs to be in a facility that can give him the right security and care.

He thinks he's still at work, doesn't he, in a big, busy manufacturing plant where people are coming and going. Dear man, it's heart-breaking.

Have you looked at specialist dementia care facilities in your area?
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Why doesn’t he have a Wander Guard on? At Moms NH the residents who may be a “flight risk” have to wear a small bracelet on their wrist or ankle which sets off an alarm if they get on the elevator or go out an exit. Quite a few residents have one on, regardless if they are on the Memory Care floor or not. Even Mom wore one for a while.

I agree that bringing him to you your house that often is not helping. At Moms facility they stress to the employees that the NH is now the residents Home, not just some temporary apartment. I think it helps with the mindset of the staff. With the constant trips, I don’t think your FIL (or your family) is making the adjustment to his new Home.
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shad250 Nov 12, 2018
He probably is not happy there.
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My friends, as usual, you all lead me back to reason and helpful ideas - thank God for your collective wisdom. We are going to visit a few more homes today to find a more suitable place for Doc. He absolutely does not like it there, and though it is small and quiet, it is more like the land of the dying versus the land of the living. It’s a 66 bed facility that concentrates on rehab/nursing. We picked it because of how caring, clean and close it was to our home. We also picked it having never experienced Doc going outside on his own. He’s not a wanderer, but an exit seeker, as he believes we are coming to get him. And can I blame him for what confusion we have caused? Of course not. The guilt is overwhelming, especially when we eat dinner and his chair is empty. I set a 5th plate out of habit yesterday and ended up in tears. His room is the same, all the pictures and name plaques bearing “MD” and the accolades he earned over a lifetime. As I collected several framed photos and a couple photo albums of early, vibrant years to take Doc today, it tore me apart to think my husband will no longer have his parents. Neither.

Met with the director who emphasized they all think the world of Doc but cannot keep him safe. There’s no deadline or day they will kick him out, but we are to actively find another place. Though he was not kept up at the beginning, I did speak with all the nurses throughout and they were prompt to address our concerns, There was an adjustment period and getting to know just how independent he is. They truly have treated him with the utmost dignity, thank God. With his income, I was pointed toward a medilodge or private home for adults that need care. I can’t bear the thought of that. And I know my husband can’t because we both know dad, and know he will choose to die. His depressive personality will prevail without any connection is our fear. His Q yesterday, in his broken minded way of trying to express himself, he said he didn’t know how he was “going to stay connected to you guys.” Tears tears tears. Tears!!!!!!!!!!!!!!!! Why can’t we bring him home to cherish these last days of the mind he has left? My husband has lost a lot of weight and quietly mourns. I know the answer but my heart still breaks and breaks and breaks.

How will I ever go back to living without the weight of these moments? Makes the world I knew seem so superficial and unaware. Oh, how I am aware now.
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Ahmijoy Nov 13, 2018
CFD, you seem to be piling drama on top of drama on top of drama. Your stress and anxiety level has gone through the roof and you both are about to crash. You are imagining scenarios that may not even happen. You are envisioning the worst.

Take a deep breath. Center yourself in reality and in the here and now. Don’t agonize over any photographs or memories for just a short while and discuss with your husband what is going to have to happen to meet Doc’s needs. Do you and your husband want to have him live in your home? Can you physically and especially emotionally handle it? Your emotions are on override right now and I’m not certain either one of you could handle Doc’s care at present. If he tends to wander, you will have to install alarms on all doors and windows and ideally have him supervised 24/7. You will need health aids and a visiting nurse and if it’s not already, you will need to modify your home to make it handicap accessible.

i wish you luck in whatever you decide to do. And I truly, seriously hope you can both find some peace.
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Are you sure none of the NHs you visited had a locked Memory care/NH unit? Did you ask? When we toured NHs for mom, I seem to recall that 4 out of the 5 had them.

Bringing Doc back and forth is making him more confused. When you find the right facility, you are going to need to bite the bullet and let him get accustomed to the routines.

I'm so sorry that that this is going so badly. Reading your last post about Docs incontinence issues made me want to cry. (((Hugs))))))).
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Finding a “cure” for Alz, Lewy or any of the dementias, doesn’t stop the aging process.

My family is generationally filled with nonagenarians & women who have had kids over 40. As my kid once said to me.... “Mom they never die in your family they just wear out”. If a cure for the dementias is found, it doesn’t stop the aging process.

The cost to support a demographically older population in a country like the US (that’s has horrendous health care costs in general & especially in the last decade of life) that is sub-replacement rates will not be economically viable. If a “cure” is found you might not have Alzheimer’s but you will still be old with aging out body parts, likely female, financially insecure and will be cognitive enough to totally know it.
Watch what you wish for.....
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CaringForDoc Nov 16, 2018
Igloo, I agree with what you’re saying. This is my first experience with dementia, and hopefully my last. All 4 of my grandparents lived to their late 70s and 80s with their minds in tact. My Grandma Mary, who helped raise me, would walk miles to church, grocery store, take us to parks and swing us on swings til the very end. She died after feeding the birds, just came inside sat down to rest and closed her eyes and never woke up. The most peaceful way I’ve known anyone to die, for the most influential person in my life. I understand we all get old and limited, but this is horrible. To be cut off from mainstream life, not able to control urine or bowels and not able to remember treasured moments - not that I think a drug can cure misery of age - just the extent and neediness of it. I watched my 47 year old dad die of bone marrow cancer for two whole years before I was 15 years old - even he had his mind until cancer took over his brain.
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Hello, I could not read all the comments right now but I have a lot of sympathy for you. We have a similar but less dramatic situation with my husband’s parents who we brought to our city from another state. They were in Assisted Living at first for 2 years and have been in the nursing home for two, both with dementia and in Medicaid. They are in the same room and the same bed (for the time being). And, like yours, my husband is having a very difficult time adjusting and living in reality about his parents. I am more realistic, but I, too, struggle with what’s appropriate? What’s kind? On and on. They are so unhappy and always wondering where is the next place they are going to live, we are not nursing home people, etc. They call us endlessly until we now jump whenever the phone rings. We have jumped through every hoop we thought we should jump through and almost every hoop they want us to.
What our gerontologist friend (and their doctor) tells us is that at this point, it IS NOT ABOUT THEIR HAPPINESS. They don’t even always know what makes them happy. And transitions (each time they prepare to leave and come back) are very hard, even though they say they “live in a box” and they “haven’t left for weeks.” It is about physical comfort and simplicity. We are learning but it is hard. Particularly on my husband who acts like (for instance) having to take a small dresser out of their room to make room for their walkers is traumatic! I have had to try to verbally train him otherwise, reminding him that even if the phone rings and it IS them calling and demanding things or visits, that does not mean that we have to jump to their tune. And that taking a dresser away does not require our mental and emotional energy; we can just DO IT and not let it snowball in our minds.
Whew. Very hard! Please breathe deeply and try to be peaceful and make decisions that are also good for you and your husband. And speak truth to each other rather than think you have to be driven by chaos and duty. Blessings to you on this journey!
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CaringForDoc Nov 16, 2018
Janevir, chaos and duty - as you eloquently state above - are precisely what has ruled our lives the past 5+ years. I’ve characterized it as living in constant triage mode. Which emergency comes first? I did not mean to convey drama, but was breaking down in tears and frustration as I wrote. Doc is really docile and doesn’t make demands, but my husband is guided by an extreme (and often overprotective) sense of responsibility and guilt. I wish you guys the best with two parents in that situation, it’s tough, but God gave us the task because we are the ones He can count on.
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