Has anyone "rescued" a dementia patient from an ALF?

leolonnie1: Thank you so much for your kind words. Yes, mom sure went through a very bad time, ending in her death.

If you bring your parent home, you will regret it more than you ever thought humanly possible. They won't get the proper care at home. And even if they look 'better' or 'sharper' than the other residents, that is due to the good care they are getting at the ALF. It doesn't mean they are GETTING 'better' or 'sharper'. Bring them home and the decline will be speedy and tragic, and then you will knock yourself out trying to find a place for them all over again.

Llamalover; what an awful story! I'm so sorry you & your dear mom had to suffer through such a thing. Imagine being told a person is 'too well' to stay at a nursing home?!

lealonnie1: Your comment about a facility forcing a patient to do PT brought to mind my situation. My late mother was a patient at an NH who was told after 10 days "You're too well to stay here." Less than 48 hours at barely 7:00 in the morning they got her up to do PT; she suffered a stroke there and died days later at the hospital!

Thereisnotry; it's a tough situation all the way around. No facility will 'force' your dad to do PT or exercise if he doesn't want to. My mom lives in an ALF and the PT comes by a few times a week to work with her. Mom is either 'too busy, too tired, hurting' or about 100 other excuses as to why she 'can't' participate today. Nobody can 'make' her do things she doesn't want to do.
Change CAN be devastating to elderly people. I think you have to weigh out the pros and cons; will he be better off ultimately in the new facility, meaning the stress of the change is likely worth it? Or will it be a lateral move that may cause more harm than it will cure? Who knows, really, since nobody has a crystal ball.

Unfortunately, we cannot control our parents; we can offer loving suggestions, and then hope for the best. My mom has progressive dementia with tons of balance issues herself, and every day I wonder if the phone will ring to say that she's been rushed to the hospital for a broken hip. If/when that happens, I will meet her at the hospital and sit by her bedside for the duration. It won't matter that I tried to get her to 'listen' to me, to do PT, to take precautions, to ask for help from the staff, etc. etc. In the end, all that matter is Love; that we tried our best to love our parents and make the right decisions for their care.

Best of luck to you, my friend.

My answer is actually to question a similar situation. My Dad is better in a hospital situation at the VA, but I think they don't expect him to get better so he won't. When he first went in last year, he refused to cooperate to go to PT and I would go twice a week and walk him in there and he got a bit stronger in his walking. After Christmas I couldn't come all winter, and I waited until now to visit. He fell twice over the last month, and now he can hardly stand up by himself. He loves PT once he's in there, loves the stationary bike. But he won't get up to do it or respond to staff's attempts and they don't try harder enough or don't have the time to work with him to get there. So now he has to sit and fall asleep in his chair, and his butt is hurting him, probably because he is used to lying down whenever he naps, but now they are afraid to leave him alone in bed during the day in case he tries to get up by himself. So if he can't sit and can't stand, what next? I scouted ALFs and wasn't happy with any of them, but still feel that he would be better off closer to home, and especially reading the messages here, that he would be better off with others around him that are doing things more than they do at his wing in the VA. Most of them are not lucid and either sit and stare or wander confused. He gets episodes like that but mostly he sits and observes. or sleeps. They said last weekend, he was watching a patient getting agitated though noone else paid attention, and he saw the patient begin an attack on a nurse and he yelled watch out just in time for her to be spared. So he does have some facilities. I think it might be Lewey Body, where they say they get better and worse at times. So I can't get his caregiver to agree to put him a ALF, and it may be too late to move him since I hear change like that can be devastating. And I am believing predictions like that, since a flu seems to have precipitated his biggest set back... I guess I am just whining, but I'd love constructive observations. thanks! (he's diagnosed with vascular dementia, but he also has balance issues and is on warfarin among a few other things, I think he is on a low does of napraxin too.)

Upstream: Yes, I thought it would be deemed a disaster living at home.

Lindabf you do not sound like an "awful person" or a "jerk". You sound like someone who, over time, has come to terms with some decisions she has made and wonders how very different life might have been if you had made different choices.
One of the things I know to be true in life is that all decisions are made based on the information we have available to us and the circumstances at the time of the decision. At the time that you removed your Mum from the ALF you believed, based on the information you had at the time and the circumstances in both your and her life that it was the best thing for everyone. In other words, you did what you thought to be best at the time. Now looking back over the years since your decision you can see the impact it has had on your life and marriage. The problem is even if you had e foresight to see those issues coming you still may have made the same decision for your Mum because you thought it was the right thing to do based on many factors at the time. No one is capable of passing judgement on what you say or feel now as no one has walked in your exact shoes through this horrific disease.
I hope for your sake going forward that you speak to yourself in kinder, gentler terms. You gave your Mum an extraordinary gift. Your intentions were pure when you made the decision to bring her home as you wanted her in a family and community setting where she could reap the benefits of both. It sounds like she has. Perhaps now at you have the hindsight of the impact on your marriage you might look into respite care once a month or more so that you and your husband can begin to rebuild your relationship alone. While your Mum may indeed live to 100 (but no worries about her living another 60 years!) you have many more years of marriage ahead of you. You cannot sacrifice any more than you already have. Use the lessons you have learned to your benefit and take time to live your life and set the foundation for who you will be when your Mum is no longer with you.
I wish you peace in all you do. Your Mum is fortunate to have a daughter such as yourself.
Take very gentle loving care of yourself.
With peace, gratitude and grace

Thanks everyone for responding to my question. Realistically the at-home living situation was a disaster. I lived daily on edge, waiting for it to be "the day" that a neighbor called me to tell me there was an ambulance or a police car at my parents' house. I have to be honest with myself that he could not be brought back home under the circumstances. It's just so sad to see him chipper, alert and ambulatory when many of the other residents are vegged-out. It is a great facility we've placed him in and I am very comfortable with it. I don't envy any of you that have actually had a parent move in with you! It does take its toll for sure.

It seems to me that you rescued your dad from inadequate care at home. Kudos! Good job!

Has anything changed that putting him back at home would mean he would get great care?

Don't you think if you pull the person out and try to take care of the person by yourself that you'll regret your decision?

Your dad is much better off being in an ALF, voluntarily, than he'd be if he were forced there due to a bad fall or some other disaster. Trouble is, most people wait until it's too late, and there's no other choice, and that's when the real chaos ensues. My dad fell and broke his hip while living independently, and it turned out he had a brain tumor. The rehab center would not release him back to independent living, in spite of having my mother there to care for him. I had to scramble like crazy to find an ALF who'd be willing to take him, in his deteriorated condition. I didn't want to place him in a nursing home, because what about mom? After 68 years of marriage, I knew they had to be together. I found them an ALF, and mom moved in too, reluctantly, because she was ' in much better shape than the other residents'. Turns out, SHE is the one who was in need of assistance even MORE so than dad! He passed away in 2015 and mom stayed on in the ALF, which was THE best decision ever. Now that she's deep into dementia, incontinent, and hardly able to walk due to neuropathy, she's in great hands with great caregivers, great food, great activities, and so on. Things change on a dime with the elderly, and you do NOT want to be in a position where you feel 'forced' to place your dad somewhere, you know? My suggestion is leave well enough alone, and allow him (and yourself) to adjust to the new way of life. Bring your mom by frequently to dine with him, or to do some activities, etc. Once you accept the fact that he's well cared for by capable staff, you'll start to feel better. Don't allow guilt to enter the picture........what you're doing here is HELPING your dad, not leaving him alone to wither away! I do not understand why we have to attach a negative image to ALFs or skilled nursing facilities. For those fortunate enough to be able to afford them, these facilities are life savers!! I know for a fact that my mom has a much better quality of life in the ALF than she would have living alone or with me.

Best of luck, dear one.

My Dad (87 years old) has lived at an Assisted Living/Memory Care community for about a year now. He is better than he was living alone at his home. And I am better because I am not all worried and caring for all his life concerns (home, medical, financial, social) on my own. His wit is happy and snappy now with me! I know its because he's now eating well, taking medications properly, and has a group of wonderful staff and residents to hang out with. I take him three days a week to lunch and for driving trips to favorite local places. He has a little calendar so he can be sure to know when I am coming by. We go on weekend getaways and have done cruises together.

I notice his memory issues especially when we are with other people and he can't engage in the conversation, and keeps bringing up his own life best experiences (repeatedly). He has issues with self care that I help to remind him (along with staff). He thinks others in his new home are frail and need much more care than he does, and at first he was calling the place an asylum. But, now, being by nature an optimistic kinda guy, he says he is happy there.

And bottom line, I am not losing my hair and living on a high stress level, and will likely out-live him, which is important! I think, don't be too hasty to move your parent home. We all have difficult situations to adjust to in our lives, and our elders do too. I believe my Dad is better off with his own little apartment, and some autonomy to not be "watched" every moment. My home is a small condo with stairs outside, and I'm afraid he would have fallen on them if he lived here. We have a wheelchair we use for him at times, as he cannot walk long distances. But I do want him to keep walking, as to not walk brings us to a whole different level of care. I have wondered about bringing him home to live with me, as it seems like the best thing sometimes. But, I have to step back from that emotion, and really evaluate what that would mean (cooking 3 meals a day, putting in a walk-in shower, taking him to senior center for social, sharing my TV for his always watching movies, sorting meds, and on and on), and never being alone. I don't have the faith for my survival! One of my key beliefs is that God loves him so much more than I do, and will care for his heart, even more than I can.

I suggest you go to a support group like I do. You will find great support & people who have been there done that. Makes you feel normal. Your not only person in that situation.

BTW, sorry. yes, you were part of the decision.

To all, I ma really moved by your stories!

Ach, beware, beware, beware!!!!!!

It sounds like you were not part of the decision to place him. Were you a part of his care before placed?

It is very easy to look at someone "doing well" in ALF and assume that they would be doing well anywhere. Wrong!

He may be doing well simply because he IS in the ALF. It is a protected environment where he doesn't have to manage, think, organize, plan, use the phone, drive, take care of money, and a host of other things.

Get the facts BEFORE you jump to conclusions. If he is doing well, leave him alone.

I "rescued" Mom from a wonderful ALF for no other reason than that it seemed she was sleeping all the time. Guess what, at home with me, she sleeps all the time. Okay, for a few years, she seemed better -- enjoyed activities like Bingo and neighborhood parties -- but at this point, I believe she would be fine in an ALF and I know my husband and I would be in better shape. It's been 8 years and she's still going strong. I think in my heart I thought that after the trauma of her fall and the rehab, she would not live much longer and I wanted to be there for her. However, I'm about to turn 70 and suddenly realize that my 60's were spent "on hold", while I played caregiver -- a role that does NOT come naturally to me. Yes, I've learned a lot about patience and compassion. Yes I've continued to feel great love and compassion for Mom. But so MANY days, I ask myself, "Why didn't I just leave her at the ALF?" She was not miserable. She was getting to know the other residents. She was coming out of her lethargy and beginning to interact with them, but I was so sure she would be better off with me. Truth is, she would have been fine either place and I could have avoided a lot of stress, marital strain, and frustration over losing 10 of my healthiest years to waiting until circumstances allow my husband and I to again have our time alone together, travel together, etc. I love Mom, AND the Bible says our first allegiance is to our spouse, although we are also expected to be sure our parents are taken care of. I sound like an awful person, I know, but if I could influence you to really and truly doubt whether "rescuing" your Dad is a decision you can live with, it is worth me looking like a jerk. Mom came to us when she was 90. She is now 98 and I have no doubt will make it at least to 100. At that point, I know I will have to reconsider my position, and I will probably place her again. I suspect it would have been kinder to have left her in the little community she was beginning to "join". She didn't like being with "all those old people", but perhaps that would have helped her come to terms with her own age and decline. She recently told someone she was pretty sure she was "at least 36". Gads, does that mean she intends to live another 60 years?! Yikes!

Upsteam, there will be many new "normals" to adjust to...having to watch it all while being fully conscious...
I, like you, small family, no outside support.
First watched it with my mom...and then she passed on in a really good way. She allowed me to be there for her last breath. It was primal, deep, beautiful, and still, enormously sad...brings a tear right now.
Dad's in a facility now, and so grateful for the help!! He's relatively ok, yet watching his slow decline in small ways. And I realize he's going to die at some point. And I process about it, off and on...and it's ok. I accept. It's part of the life process.
I focus and appreciate and enjoy the end times...I share stories and snacks...hug and kisses. Grateful he's still here. Until he's not.
Truly, what else can one do?

All the best to you and your parents!!

I agree with "it's impossible for a senior to provide 24/7 care by herself." I did it for my husband when I was in my mid-80s with just the support of home hospice. I felt relieved when the hospice team showed up in our home with the nursing home papers filled out and ready for me to sign. I did. Now 86, I feel I'm still recovering from overextending myself as a home caregiver to my husband.

Thank you all for your answers. Maybe I haven't yet accepted his condition and still want to think of him as my dad who took such good care of me and mom. Maybe I'm still in denial and also feeling guilty. It's so weird to have him living...somewhere else. My parents have been married for over 50 years and we've been a small but tight family unit. Your answers reassure me that placing him was probably the best move for everyone. I really appreciate it.

It may seem like dad is doing better, but, if so, it's likely due to him getting better care. Plus, I believe the residents sense that they are with people who also have dementia and that they feel protected.

I saw that when I moved my LO from a regular ALF to a Memory Care AL. She needed a higher level of care and as soon as she got there, it was like she instantly relaxed. She was right at home and so much better than in the regular AL where she was scared and confused.

All patients in the facility eventually progress. He won't always be the in the best shape. My sense is that they support each other and understand each other, regardless of their progression.

It's very challenging to care for a person who has dementia in the home around the clock. And for another senior to do it.....it's just not feasible. It really requires 3 shifts of people. Have you tried to provide care for a dementia patient around the clock for even a few days? It can be a 24 hour job.

My inlaws are thriving physically now that they're in a nursing home. They are getting three good meals a day, regular hygiene , clean laundry ,and their medication . They are staying there- despite hating it and us.

I definitely agree with the other answer. Your dad is probably doing better because of the stability provided by the ALF. Having regular meals, regular medications and outside stimulation available helps a tremendous amount. Just because he seems to be better than others at the facility doesn't mean that he could be at home. Trust me, I know how you feel. My mom went into a rehab in December and lives alone. She has been transferred to the long term unit while we apply for Medicaid and get home care in place for her. Some days I think to myself that she could go home without support. However, when I think that, I remember back to when she was home alone, missing medication, double dosing, falling multiple times a day and driving her blood sugar through the roof. While I feel guilty for having her in a nursing home right now, I know the only reason she is as well off as she is right now is the regular schedule and medications she gets there. If she were to go home alone, I would be back under constant worry and I'm guessing the frequent falls and medical fluctuations would return.

Thank you geewiz! Yes I do think it's the guilt setting in. I went on auto pilot while going through the steps of getting him placed. Now that it's all done I'm having time to reflect and think about what a big change this is for our family. Thank you for responding, your ideas make a lot of sense!

Hi Upstream, memory care residents change all the time and so does their condition. Residents who were helpers to the aides when I first placed my Mom in memory care became the neediest residents a few months later! And the woman that was screaming for days upon her arrival, became one of the most docile residents. It is uncomfortable for us to see the actions of others that seem worse off . My suggestion would be to give it time and to help your mom regain her strength. Proper meals, proper rest and reduction of her stress. Get her to her medical appointments, dental visits, eye exams, etc --all the things that have been put off during Dad's decline. Dad will have round the clock care. I actually made friends with other family members of the facility my Mom was in. We all supported each other through declines and celebrated the victories.
Trust me, it's impossible for a senior to provide 24/7 care by herself. You can always take him home but I wouldn't do it for at least 6 months. And I beleive at that point -- your Mom will be stronger and you will be rested and both will be able to assess the situation more clearly. Right now, the undeserved guilt is leading your thought processes. Let us know how it goes.