Dad is far away and lonely in assisted living.

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Buffalogal Asked January 16, 2024

Dad is far away and lonely in assisted living.

Hi everyone I last posted in December . Dad given bladder cancer diagnosis w 6 months to live. He’s been in and out of hospital, rehab, independent living and 2 assisted livings and hospice in span of 4 months. H refused multiple times to move closer to me and I’ve been able to accommodate his requests to move him to different facilities ( because he didn’t “ like” whee he was - when in reality it’s the circumstances he doesn’t like) he’s now on a very nice assisted living facility right next to where he lived for 40 years. His apartment is cozy the place is spotless and airy . There are some issues with staffing of course but resolved w regular follow up and check ins. I’ve arranged for hospice to come in 5xs a week, and even got them to approve 6 sessions of pt ( while on hospice) to get him
strength byto get into a wheelchair ,he has a dr at the facility who actually is the dr for another local hospice , who prescribed him a baby dose of anti depressant. , I got him a smart phone and taught him to FaceTime which we use multiple times a day and even “ go for walks” or “ watch tv “‘together and he enjoys that. I visit every 10 -14 days for 3-4 days at a time The issue is.. he’s so lonely. He’s bedbound and is frustrated. He’ll call the care givers for something silly like he dropped the remote , and get frustrated they don’t respond straight away, while I’m more concerned they don’t respond to change his brief until after 2 hours. He has some unrealistic expectations but he doesn’t need full on nursing care and this is better than a nursing home and half the price. He eats hardly anything they bring,, but will a bit when I visit. He’s basically alone in a room. Hospice doesn’t have volunteers, to visit, only their social worker and chaplain who come once a week, the facility does not have volunteers and he’s bedbound so can’t do activities , and I’ve called all the senior orgs there and no one has volunteers. Even the VA has no volunteers. This is sad. His mind is sharp but he’s giving up because he’s so depressed. He’s saying he doesn’t want pt now Dr going to up dose of anti depressant but he really needs company. Any ideas? I can’t believe there are no senior programs anywhere ? Do I hire a companion? I can fix a lot of things but not the loneliness. It’s all he talks about and I’m feeling powerless as someone who tends to be a “ fixer” in my everyday job. Thanks!

Assisted Living Care Decisions Depression Loneliness Long-distance Caregiving

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score 3 · Answer 1

https://hospicefoundation.org/Volunteer#:~:text=Hospices%20that%20participate%20with%20Medicare,volunteers%20and%20value%20them%20greatly.The above link is in regards the hospice volunteers being required by Medicare that Grandma mentioned in her post. I had never heard of a requirement so I called my DH aunts hospice to inquire re their policy. They are required to have a volunteer program. They don’t actually have any volunteers at my hospice (very rural) but they have a procedure to train and utilize volunteers. They do market for volunteers through social media and leaflets. The coordinator explained that the program shut down during covid and really hasn’t started up again since then at their office. She felt larger cities had more volunteers. She said the hospice volunteer filled out paperwork much the same as applying for a job, watched some films and visited with hospice workers for training. Thanks Grandma for telling us about this aspect of hospice.

Helpful Answer (3)

Thank you. The answer I keep getting is Covid shut down everything. This hospice has 2 volunteers! TWO. And they are Philly based and he’s in the burbs. I don’t accept that. I run a non profit program and we have many many volunteers. There have been some great suggestions here and I can’t wait to follow up! Thx

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score 3 · Answer 2

Until a post earlier on and because a friend does it in another State, I had never heard of Hospice Volunteers. I know my friend has some training. Really, its something that only a certain type of person can do. I am not one of them. So maybe some Hospice's cannot find volunteers.

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It is inconceivable to me that there are programs to socialize shelter dogs ( I volunteer) but not enough for elderly! Just so sad. I’m going to reach out to my local facility in future and volunteer locally at a senior facility. Maybe I’ll start something. There are 8 people on hospice at this assisted living. I’m sure they all would like a visit

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score 0 · Answer 3

My brother had bladder cancer and hospice and I see bits and pieces of further decline. My brother only lived 6 weeks fom diagnosis. You are correct that he is not happy with his situation and the disease has taken control. The similar decline is in not wishing to do the work for strength training. He is getting weaker. His appetite is decreasing. Next it will be sleeping more. Lack of calories means less energy to use muscles and eventually there is muscle wastage. My brother, in his mind always expressed a desire to fight the decline but could not fight it.
You can try a companion but you might only see disinterest as he is letting go. This is part of the March towards death. I think hospice and you should be focusing on the rule of support of symptoms and not so much in a rule of rescue.
I also see the AL is not adequate for his needs if he is already bedbound. You either try to hire an extra caregiver or get him moved to NH. ALs usually provide about 3 hours of care each week for assistance with bathing, dressing, toileting, etc. He may no loner assist for transfers so he may not be participating in activities outside of his room.
For examples:
Changing for incontinence while bedbound, may require more than 1 person with turns.
He might need full on nursing home if he is getting his food in his room. AL residents usually eat in the dining room.
Volunteers are just that. They are not plentiful and difficult to find. Why do you not volunteer? The answer should be apparant if you have never volunteered in this capacity before dads diagnosis. Lack of volunteers is not an indicative factor in a facility.
As I mentioned, you might want to hire a companion to see if things will get better, but do not be surprised if it does not work out.
I wish you luck,

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Hi. Thx for responding. This facility provides more care than a regular assisted living. He receives level 4 care (4/4 levels) they bring him his meals, and empty his catheter and do provide 2 staff to turn him . Hospice nurse now comes 3 days a week and hospice aide 5 days a week. I did my homework in the care piece and advocate strongly and am a “ squeaky wheel” when I need to be , checking in w managemt frequently and always having snacks in the room for staff . Sadly I live 6 hours away so visit every 2 weeks - I am looking into developing a volunteer program locally partnering w a facility here when the time comes. I’m sure we have the same issues locally. I volunteer w dog rescue and it kills me there are so many volunteers for dogs, but none for elderly

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score 3 · Answer 4

Alone in a room at ALF is unusual. If someone is someone others enjoy visiting usually there are TOO many visits to those confined to bed in ALF in my own humble opinion.

You can't fix everything, and sounds to me overall this is going as well as it can. You are trying to help in so many ways.

I would discuss with administration, because I just bet that word going out to other seniors in the facility would get him more company than he can handle. My brother's ex was very social. My brother passed and David lived years more. He socialized almost every waking hour and would definitely go in to visit those ill or confined to bed. So ask administration if they have any ideas in that regard.

Just be certain to keep in mind that you cannot fix everything, and aren't responsible for everything. Life is full of grief through all the years we live. Some things must be lived with the best way we can. There are podcasts on tablets, TV, other things, even solitaire for the lonely times.

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Thank you for your response. I had not thought about asking other people that are at the facility to visit my dad. I’m sure they can find a match who is able to get around on their own, but might want some company. This facility has more men there than women, I will check tomorrow. Thank you for that great idea.

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score 3 · Answer 5

Yes to a companion aid. I found one for my 2 very senior Aunties in FL. I had to go through a few "losers" first until I found literally a perfect person, which made it worth it. Like my Aunties, she grew up in NYC and then moved to FL; also Italian American; shared the same political views; etc. They had her for 6 years and she was a doll. We found her through Visiting Angels so we called her Barbara Angel :-)

You say your Dad is sharp but mostly depressed. This may mean that no size "entertainment committee" will make him happy. You will need to come to peace with this. Still, I would try an aid, but do not pay for this yourself... this should come out of Dad's funds. Also try to find a male aid, and maybe an older one, if at all possible. I know your Dad is on "borrowed" time, but if I were in your situation this is what I would do to help him.

Right now there is a profound labor shortage. There is also a volunteer shortage due to an aging society and decline in the younger demographic (I'm an elder in my church so we are dealing with this all the time).

Helpful Answer (3)

Thank you for your response. Insightful answers. They’re most certainly is a labor shortage and the response that I keep hearing is that volunteerism really declined after Covid. I find that interesting because I run a nonprofit program and we have more volunteers than we know what to do with, same is, the case in my own volunteer capacity working in dog rescue. It’s so sad that we have elderly in nursing homes who are lonely. So many great suggestions in this thread I appreciate yours and will follow up on the companion idea. Thank you.

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score 2 · Answer 6

Hospice is REQUIRED to have \Volunteers. This is a Medicare, Medicaid requirement that a % of patient cost is covered by Volunteers. So I can't believe there are no volunteers.
If the facility allows it hiring a companion might be a good idea.
You could check with a church or other religious affiliation if he is a member of one and see if they have volunteers.

Helpful Answer (2)

I had no idea this was a requirement! This Hospice told me that they have had a decline after Covid and they currently only have two volunteers with them the other challenges he is in the suburbs well outside Philadelphia and I think these volunteers are in Philadelphia, which is why I’m trying to find other volunteers on my own Thank you for this information, though it is very useful and I understand now that I can always change hospices and although I am not sure, I want to do that. It is definitely a question that I now know has to be asked when considering Hospice care.

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score 3 · Answer 7

First I have to say that I've never heard of a hospice agency allowing PT for any reason, nor coming 5 times a week unless the patient is actively dying, nor not having any volunteers. Something isn't right here.
All hospice agencies in my area have volunteers that come out for a few hours to visit. In fact I myself was a hospice volunteer for over 8 1/2 years and loved every minute of it.
You might want to check with other hospice agencies in your fathers area to see what they offer as you can switch any time you want. I would also call his local Senior Services and Shepherd Center as I know for a fact, both have volunteers that will come out to visit.
And of course last resort would be hiring a companion to come spend time with him.
I wish you well in your endeavor to help your father.

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Thank you for your response. I work in a nonprofit as a program Director and I spend pretty much every day advocating for many people and issues so you best believe when it comes to my father, I will advocate to get what he needs. That’s why I was able to pose the PT in a way that made it look like it would be more helpful to them if he could help them get himself out of bed. L O L sad part now is he doesn’t want to do it, but he had the choice. I also just got them to agree to have the social workers come out twice a week that will start next week. The nurse comes out three times a week. The caregiver comes out five times a week. This is some thing I was able to negotiate. He has Medicare and they are covering it, he is not actively dying yet. Thank God he is also a very charming person and people like him. I don’t know if that has something to do with their willingness to try and help as much as possible. The biggest issue though is the depression and I am really challenged by that because I have limitations as to what I can do and where I can find help. I have received some great information on this thread, which I am looking forward to following up with tomorrow , thank you for your response and care

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score 1 · Answer 8

I like your idea of hiring a companion since you haven’t been able to find any volunteers.

Have you contacted Council on Aging in his area? They may know of volunteer organizations that you haven’t heard of.

Your dad is very fortunate to have a daughter who is an incredible advocate for him.

I agree with you that isolation and loneliness can lead to depression.

Wishing all the best to you and your dad. I hope that you are able to find a suitable companion for your father soon.

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Thank you for your kind words and information. I was not aware of the council for the aging, but they will be first on my list to call tomorrow. I have had many good ideas generated from this thread, and will follow up on each one of them. Thank you again.

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score 1 · Answer 9

Does the AL have activities and such where he can talk to some of the residents? If not, then hiring a companion from a care agency can be done.

Its hard when we are fixers in everyday life, and there here we are with our parents and really not that much we can fix.

Helpful Answer (1)

There is an activities Director but all of the activities and there are many including men’s meeting groups that happen in the lobby, or on the first floor. I have a call into the activities director to see if she can arrange some things in his room or even he can host the men’s group once a month in his room, and I will gladly have coffee delivered from the local Wawa for the group to enjoy. Great ideas on this thread and I appreciate your feedback and ideas. Thank you.

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score 2 · Answer 10

Check to see if there’s a Faith in Action volunteer program near him. FAITH IN ACTION -
This program provides volunteers to the elderly and disabled.

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I will most definitely call them tomorrow. I’m not familiar with the group, but this is exactly exactly the kind of feedback I was hoping for. Thank you so much.

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Dad is far away and lonely in assisted living.

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