My father is 78 years old and has lived alone in his own home for the past 40 years. His house is an hour away from where I live (with my husband and my children - 2 grown and 1 leaving for college in the fall). For the past year, I’ve been visiting dad at least 3 times a week (going to lunch, running to the food store, and just being there to have companionship). It’s been exhausting but I knew my dad's health was declining - so I did it without question. Dad walks with a cane and has some minor confusion.

I’ve been trying for over a year to talk my dad into moving. He never had any interest... Two months ago, I couldn’t ignore my dad's medical decline anymore (his walking was getting worse and worse and he wasn’t taking care of himself). I talked him into going to the ER to get things “checked out”. He looked horrible and I was scared. Since that visit to the ER, dad’s been in the hospital, in rehab, back in the hospital, and now back in rehab. As you could imagine, my dad's anxiety is through the roof. He’s a bundle of nerves.... he may also have the beginning of dementia, but I believe that his fears are real. Seeing him scared and out of control from time to time, breaks my heart.

He’s been in so many different places (in just the past 2 months) and even though I visit every day, each time I leave - dad wants to find his keys and come with me. Here’s the problem.... I’m preparing myself for his discharge from rehab. My initial hope was that he would be “ok” with this rehab and then eventually, would naturally transition to AL (in the same bldg). I’m starting to think I have been in huge denial because it’s not that surprising that my dad doesn’t like the rehab at all (therefore I can’t imagine him ever feeling comfortable moving into the AL there). There’s no way he could go home (he needs far too much care AND even if he had in home care, it’s an hour from me 1 way, so I’d still be going down there every day to check on his care). I know of a few other AL’s in my area but I’m so scared that he’s going to hate all of them - because really he longs for the days when he wasn’t sick and life was good. I’m sorry - I forgot to mention.... he was diagnosed with bladder cancer 2 weeks ago. I’m not sure what the future holds for him. I just am consumed with guilt and worry. I don’t want him to be scared, anxious, and unhappy. I want him to make friends, discover new hobbies, and enjoy life! I don’t know if he’ll ever allow himself to do that. He’s seems depressed but the docs say no. I tell them he’s scared, and all they want to do is give him anti anxiety drugs (which we have found out the hard way - do NOT work effectively on him.). Please, if there is any advice you can give me - I’d really appreciate it. I’m 51 and I love my dad but I know he can’t live with me. I convinced myself that AL was the best option for him but I don’t know anymore.... Please help me cope as I try to make sense of all this!

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The AL is an unknown and the unknown is always scary for everyone. Your father may do very well after he makes the move and experiences the AL lifestyle. His anxiety may also decrease once a decision has been made since uncertainty fuels anxiety. You may talk to him about the AL move being temporary during his cancer treatment and recovery. If your father doesn't have significant social ties at his current location I recommend finding an AL closer to your home and where it's easier for you to visit. During cancer treatment your father may find your presence much more comforting than your road time. Less road time may be much less stressful for you too; I find too much driving gives me to much time to think about all my fears. I found these "transition" time periods and decisions the most stressful period of caring for my parents, at least so far. You cannot return your father's good health or stop the aging process. You can help give him an environment where he can enjoy his good days.
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Hi Anna, a few thoughts from my experiences with my Mom. I watched her decline, brought in help a few hours a day, and ultimately a live in. When she broke her hip and needed surgery, I started to empty her apartment and look for care outside in a facility.
When rehab was done, we had already booked a place in Memory Care/Assisted living. When we picked her up from rehab, we told her the doctor wanted her to get more practice with walking and brought her to the assisted living facility (6 minutes from my home.) She was there for 18 months before she passed. They took good care of her and I was able to visit daily. Not for 12 hours but I did get there. She was able to get PT in the assisted living when she needed it.
We just never mentioned that the move was permanent and were lucky that she was very cooperative.
As the adult in the equation, you get to make the 'best decisions'. Anything can be changed but I would look for something close to you. Good luck . . .
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Are the doctors that you're talking to know of his drinking history? Are they geriatric psychiatrists?

It seems to be that if your dad is now detoxed, its important to get him into a supervised environment for his safety and wellbeing.

This must be so hard for you!! I think we go through a patch of real grief and mourning when we realize that we're the adult in the room and need to reassure our elderly parent that everything is going to be okay.

Be kind to yourself, and don't discount the idea of getting some therapy/counseling yourself to help you deal with your current angst.

Are you talking to the social worker at the rehab about his future needs?
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LarkInTN Feb 2019
Drinking history?

My heart goes out to you. So much is happening all at once.

Your Dad has cancer, that is enough to make most of us anxious, unhappy and scared. Those feelings will not go away based on where he is living.

I think you are on the right track, Assisted Living would be best for Dad or perhaps even a high level of care. Have you talked to his doctors about what to expect once he starts treatment for his cancer?

If he moved into a facility closer to you, how does that impact his medical treatment? Is there a hospital close to you that he would transfer to as a patient? I find the US medical system to be confusing as far as where one can go for treatment. If he would have to go back to the hospital where he is currently living, then an AL close to it would be best. You do not want to have to drive him and hour each way for treatments.

You say Dad is a bundle of nerves and also that the anti-anxiety medications have an inverse affect on him. 2 of my adult children, my brother and father are all diagnosed as ADHD. One of the interesting things about ADHD is that many medications have an inverse effect. Coffee is calming, ADHD meds are generally versions Speed, but are calming, instead of stimulating. It may be worth asking the doctors about the possibility of looking at other options for treatment. Or do you notice if he is calmer after a cup of coffee?

You deserve a hug and a pat on the back.
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You need to talk to a social worker about your concerns. See if you can get them to recommend 24 hour care then you can refuse to care for him. A doctor recommendation may be just enough to get him into AL.
The bladder cancer is a different animal. He may soon need surgery and a very long recovery once the oncologist gets involved
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I agree with TNtechie, if he doesn't have any particular social or family ties to the area he's in now you really will be better served (and so will he) by moving him closer to you. If there is family that visits sometimes you are only an hours drive and unless they are taking on some of this day to day responsibility I'm sure they will be supportive and make the drive. This is probably the perfect time actually for this transition, with his new cancer diagnosis he will be getting new specialists who will be the doctors he sees more regularly (so new people, change) and he will need to go from hospital to facility or some combo through his treatment so setting all of that up near your home wont be any more change than doing it near his and less than he will need to go through in the future when you end up needing him to make the move anyway. I think making the move to AL could be explained as what needs to happen while he is being treated for and then recovers from the cancer and chose a facility like the one it sound like he's in that has a rehab wing, AL, maybe MC and NH, IL would be great too just because it might make it all less threatening to him. Seeing people his age of all different independent abilities might be less frightening and depressing (of course he's depressed, I know I would be!) and honestly moving from his current rehab facility into AL in a different one might be just the ticket, the fear of it being the same place he's been in (that he refuses to like) is removed and in AL he will have a bit more freedom, a little less hospital like so probably not what he will expect and always feel, warranted or not, even a new room in his current place to be. My GM went to an IL apartment that had an AL & NH/rehab building she could go to or come in and out of as needed, it was all part of the deal. This way she started independent, in a retirement community where she made friends, lunched with her neighbors and even had a gentleman friend for a while and while she never ended up needing it had she needed AL she still would have been around her friends and neighbors, able to go to lunch with them and if she needed NH or Rehab they could visit her daily. But she established herself first and then never had to really "move" to a new place entirely, the view was familiar. I guess my point being that if you can get him established and comfortable, even while thinking it wasn't permanent in his mind, in his own room with his own things, less like a hospital room then moving to skilled care and back might be less stressful and anxiety causing. Same reasons for going to a place closer to your home now if you can...

For his depression and anxiety, have you looked into Essential Oils and Aroma Therapy at all? It's important you use pure oils but you can get an inexpensive diffuser (Amazon has several) and just doing that in his room might help. Studies have shown that it can help in hospitals and in the elderly population too, I will say my mom's room in Rehab was very popular amongst the staff! Lol
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Both my parents had bladder cancer. If the cancer is contained to the bladder, treatment is very evasive. The chemo is put directly in the bladder. The person then is told that they need to turn from back, to side, to tummy and other side every few minutes. Its best that they have a bathroom to themselves. The chemo contains live TB. So after using the toilet, it has to be cleaned with Bleach.

This may decide where Dad has to go. All depending on how far the cancer has gone and what type of chemo will be used. My Mom was 80 when she went thru treatment my Dad in his 70s.
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If he's already had a couple of rounds of 'hospital-to-rehab-to-hospital-to-rehab' he's probably somewhat more confused and somewhat more deconditioned than before he first went in. Of course that would be scary. Add to that a new cancer diagnosis and he may be seeing this as the beginning of the end ... and he may just want to go home and be in his familiar environment until that happens.

Can you get the doctors to have an honest conversation with him and you together, about goals of care? What treatment do they consider appropriate? How debilitating would that be? What are the most likely outcomes?

Can he get some PT to help him recover what strength and independence might still be possible?

Is he able to tell you what he wants for his end game?

If he's been living alone in his own home for 40 years, he may be unwilling to face a change to AL with all the social interaction (even at the most introverted level he'd be seeing multiple people every day) and all the lack of choices about things like what to eat (if he's not cooking). OR he may welcome the chance to sit back and read the paper or watch TV or surf the internet and have someone else take care of everything.

It's important to realize that some of the decisions we make (and doctors make) for our elders are motivated by our own fears, which can be different from theirs.
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Wow I could’ve written your post myself... unfortunately, dementia doesn’t get better. Dad cannot Care for himself. Of course you want him to be happy and make new friends and find new hobbies, but for someone with dementia, those things seem overwhelming sometimes. First and foremost, make sure he’s SAFE, then HEALTHY. Taking care of those basic needs are all we can do. We cannot make our elders happy, nor can we let them go back to an unsafe living situation.

Bladder cancer is treatable! My mom had it over 20 years ago, and had the BCG treatment. No chemo- great outcome. Think positive and take one day at a time. You are doing the BEST you can, and unfortunately, the decisions that you must make are not easy but they are necessary for your dad’s well-being.
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NeedHelpWithMom Mar 2019

My dad bead bladder cancer too.
Of course you want him to like AL, be happy, find friends etc. We all want that for our parents when they move out of their home. You have two things going on inside of you and it’s have your head talking and your heart talking to you. No, your dad can not go back home in his current health. Yes, it will not be easy for him but you will need to make this decision. When he’s ready to be discharged from rehab, there should be a care conference and all professionals involved will meet with you and dad ( if you want him to attend) and discuss what is recommended for him next. It’s highly likely they will say AL. You might want to speak to the doctor before the meeting to see if he or she expects this and will back up a move. The best plan would be to move him immediately and not go back home first.
Many moves like this is always hard on upsets their routine, what they know and the balance of their life. So it’s no wonder your dad is anxious. My dad was in and out of rehab many times and the first move was to AL and now he’s in the NH. He didn’t settle in right away to either place and that is hard to take as his daughter. But the sooner you wrap your head around the fact that he will have struggles, and that he might even have anger at you, the easier it is to take and understand this is a normal reaction. Do not go in expecting him to adapt immediately...also know that you can not be responsible for him being happy. All you can do is your best and be there for him as needed. Most likely in around 3-6 months he will adjust and things will smooth out. I say these things from experience and wish someone could have told me these things. But that’s why we come here, to share what we’ve been through. You sound very caring. If you can get a sibling or spouse on board to be your partner it will be a tremendous help.
has your doctor tried Buspar for his anxiety? It is not a benzodiazepine like Xanax and is easier in them. It helped my dad a lot. Also a SSRI antidepressant can help with anxiety. It was a god send and a game changer for my dad with his generalized anxiety disorder and depression.
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