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.
We learn from each other!
I know that dementia removes time awareness. My husband constantly asks when I will be home even though he may have asked 10 minutes before. He isn't really that bad but has made a decision not to drive any more.
My mom has early dementia and I too feel recurring heartbreak seeing her decline and it's impact on my dad. I too have been drained by being in constant fire-drill mode, problem solving, call answering, shoulder to cry on, etc. Plus I want to have a good life with my husband, and there is a lot of dysfunction with my parents and sister that make it so much harder. Sigh. Anyway, I will be hoping the best for you all.
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!
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.....
https://alzres.biomedcentral.com
... who introduce themselves as follows:
Aims and scope
Alzheimer's Research & Therapy is the major forum for translational research into Alzheimer's disease. An international peer-reviewed journal, it publishes open access basic research with a translational focus, as well as clinical trials, research into drug discovery and development, and epidemiologic studies. The journal also provides reviews, viewpoints, commentaries, debates and reports.
Although the primary focus is Alzheimer's disease, the scope encompasses translational research into other neurodegenerative diseases.
I have to admit it's not what you'd call casual reading. But it is an interesting glimpse into the field, even for a lay person (who's in the mood to concentrate!)
I believe the medication that Glenstone is referring to is Adacanumab, produced by Biogen. Initial studies have shown very promising results, but there have also other drugs that looked promising in initial trials. While I am holding out hope this may be the "miracle" drug to treat this horrible disease, it's too early to get too excited.
Yes 125k per injection.
The Motley Fool has run a series of articles on Biogen past couple of years, which are pretty easy reading.
125k per injection...... I cannot imagine being a parent with a child with SMA who is told their health insurance will not cover it.
Anyone want to guess what their breakthrough Alz drug will cost, IF they actually produce one that is effective.
I have less confidence that the breakthrough product will "cure" Alzheimer's Disease. Not that I wouldn't love to be wrong!
How much do you suppose has been spent on treatments to date, worldwide? I don't know, but I'm sure the profits have been wholly satisfactory.
Like I said, it's way over my head.
...lets just say, if you hear of a pharmaceutical company that has a facility in Switzerland that has a wonder drug for Alzheimer's.....you better get as much stock from it as you can afford.
Anyways...I say let's think that I'm right and hope someday you'll look back on this and say "Holy crap!!!...that guy that commented on the aging care forum was actually right!!! I'm glad I listened to him and I investigated it myself and realize that he was giving us a big tip on something indirectly and now we won't ever have to worry about money again...lol
Also you might want to rethink taking him out so often so he can settle in and get accustomed to a routine. I dealt with this with my father and he was out in a wing that he couldn't get out of. I wouldn't wish this problem on my worst enemy.
There is good news for the future. I work at a company that makes giant fermenting machines that make medicine. We just sold a huge warehouse full of them to a company in Switzerland for 5.4 billion dollars. The pharmaceutical company who bought these tanks, said that they will be making medicine that cures this terrible disease. Unfortunately we won't even be hearing about this medicine hitting the market for 4 or 5 years. It will take two years for us to reassemble these complex tanks in their building. It will then take a few years for them to have mass produced this medicine and make it available all over the world i assume. I'm sure they are telling the truth to us. Who would spend 5.4 billion dollars if they didn't think they would make many times that amount selling this medication.
The vibe I’m getting is your both layering on drama and this is very unhealthy.
the facility that doc is in hasn’t sent you a 30 Day Notice; they are actually wanting to work with you as long as you all are actively looking at places. I’d suggest you try to have him stay there till he clears being “Medicaid Pending” and clearly ask if thats a plan that this current facility will go along with. It buys you time.
Clearing Medicaid could take a few weeks or a few mos. For my mom it was 5 & 1/2 mo, which was slightly more than The TX average of 4 mos to clear a Pending review. I’d you run into Medicaid issues, post what the hurdle seems to be. Lots of us have been through LTC Medicaid.
It sounds like he needs MC or locked ward NH..... not all take Medicaid so you may have to go farther geographically to find a place. Like where I am - New Orleans - lots of families end up placing the elder into a facility outside of NOLA like hrs drive away, as the better NH/MCs here in the city are Medicare for provider services but only private pay for room & Board.
Well goodness
I worked in a SNF. WE had a woman who was known to leave the premises. Our JOB WAS TO KEEP AN EYE on her. I used to find her at bus stops etc.... We NEVER threw her out.
It was a ambulatory only nursing home only.
We had one man who was stuck on sex as well. He had sex with one patient... Didn't throw him out either ..I could go on..
Its ABOUT finding the right home.
I presume it depends on the Coordinator. How much time they will put in....
Everyone needs a place....
Also if things got real ruff we would hire a gal to. Work p/t to sit b at bedside just to babysit some pts....
Im so sorry this is happening but ALL snfs are different...
If he has to leave..next place has too agree too wandering.
Hope this helps
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.
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.
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.
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.
There is also a good article on this site about 'dementia villages' explaining the concept. Sadly, it can only say wouldn't it be wonderful if there were more of them; and yes so it would; but until that day dawns there are still facilities doing sterling work. Good luck with the search.
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))))))).
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?
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.
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. .