My family has been struggling with this question. We are extremely fortunate and blessed that he is still able to financially support himself and he has the resources for either full-time care at his home or to be moved into a nursing home. My grandmother has already moved to a retirement community (where he could move to skilled nursing) because she doesn't want to manage the house or the professional caregivers and she wants more social interaction. My grandfather isn't mentally well enough to say much. We know that he loves being at home but we also know that it's really lonely for him without my grandma around. How do we decide what to do?
In my view, based on my 18 years of caring for my wife at home, the best place for a dementia patient to live is their own home, somewhere they are familiar with and have lived for years. BUT, there are plenty of considerations if you choose this alternative.
First and foremost, the home should be made dementia friendly. Stairs, steps, two story homes, and the like have to be well taken care of, because slowly the patient will have difficulty managing such steps and stairs and the risks of falls and getting bedridden are the greatest worries. Wheelchair access ramps, ensuring that the door openings to the bath and toilet are wide enough to allow wheelchair access and the bath is large enough to allow the aide to do the patient's bathing with ease.
Once the home is taken care of, then the question of finding good care support is the next challenge. Providers will send you applicants, but you have to teach them about the routines, and you have to write detailed job descriptions for them. And you have to be vigilant and in control. Such care arrangement needs supervision to ensure that the aide does the duties properly and according to your wishes. The supervision can be made easier if there is a system of recording daily events in a simple table which can easily be sent to you over the net to ensure everything works according to the plan.
All of these topics and many more are dealt with in detail in my recent book, Dementia Care Companion.
But to help with the lonliness, maybe the answer is to pay another person to just visit and do activities with him several times a week? Maybe it would end up costing the same as SNF, but then you would know he is getting socialization and attention, in addition to care, right?
I'd also install cameras in his home (we have 3 Amcrest cameras installed in my mom's house), if you have not already, so you can check on him and his caregivers and visitor to ensure what you think is happening, IS happening.
My advice is based on two instances I know of:
1. My mom's elderly boyfriend (99 years old) was put in a home. He was active and totally healthy prior to that (would even use her rowing machine for 30+ minutes at a time when he'd visit her house). Once he was put in the home by his son, he refused to leave his room (even for meals) and meet anyone. He went downhill fast and passed within 6 months.
Personally, I think it was horrible of his son (who lived several hours away and rarely saw him) to put him in the facility, as I knew how bad dementia could get (from dealing with my dad), and this fellow seemed to me to just have age related memory loss...NOT dementia, and he did have companionship and socialization with my mom (who drove him around and hung out with him all the time). She too was shocked and devastated about this, but could do nothing.
2. My dad who DID have dementia (my parents had divorced 50 years prior). If we could have paid people to visit with him and care for him in his home, I really think that would have been best, but he lived out in Timbuktoo (not the name of the town, but you get the idea...very remote) and there was no one around we could hire for him. So, I finally found a really nice adult family home for him (near me, so I could visit several times a week)....really liked the caregiver...he seemed to like it there for maybe a week, but then wanted to go home and started sundowning so bad he broke and jumped through a window late one night (at 86 years old!), and had to be put in a locked down memory unit with people with dementia much worse than his, but which was secure. He went down hill fast from there...with in a month he passed away.
To be clear--I don't think all care facilites are bad...so far as I know both of the above ones were just fine...but in both of these scenarios, I have to think that if they could have been left where they were, and just had support and care people, they would have done better. This is NOT the case for everyone, I totally get that...each situation is unique....but with them I think it didn't work.
My initial instinct is to say: community / more workers (24/7).
However, this could depend on the level of his dementia.
My client had advanced dementia and was in a memory care unit with others. I believe that regardless of our cognitive abilities that being around other people - and having activities - if just tossing a ball around, listening to music, watching a large TV screen, or hearing singers - it is 'good' for the person / resident experiencing these things / this stimuli.
* You can certainly decorate his room / bring his furniture, photos of family and more to the facility. You can make it a home.
* Since his wife isn't at home anymore, I would presume that he is quite lonely. And that being in a facility / 'home' with others / companionship / will or could only be good for him in many ways.
* It doesn't sound like a good idea to have 2-3 caregivers on 8 hr or 12 hr shifts and expect them to 'entertain' or show him the attention in interacting / activities that he could get from a care facility.
You could do the "pluses" and "minus" chart - write down the list and compare.
Personally, as he declines, it seems to me that he would benefit more from professionals in a facility, which include social worker(s), administrator, management, and a variety of line staff (caregivers) - who do not get (as) burnt out as private caregivers to - plus at a facility, they are held more accountable (or should be).
He would love being at home because it is his life and all he knows. So this is understandable although he may be 'resigned' to be there - while lonely, if / when he remembers his wife is not there.
As another said below, consider your own / family needs - as he declines.
If in-home care, caregivers leave and that cycle will continue on with varying (new) needs as he declines.
* Investigate care facilities. As I mentioned, go and observe for an hour or so on different days / times of day/night.
* Cameras may also be helpful if you feel it is needed.
* I would ask for references if possible although facilities certainly may not be able to give you names / contacts of their residents' families for obvious reasons. As you go and observe, you hopefully will see family members of residents there and you can talk to them.
* I am amazed at the lack of sensitivity of some people responding here. Nothing is 100% ideal anywhere - and nowadays, care facilities are short staffed.
There are pluses and minuses to whatever decision you make.
With your financial resources, he isn't stuck anywhere which is a huge plus.
Clearly, many people here project their own experience onto others here vs providing supportive suggestions that would / could help you / the writer make a decision.
- Although perhaps that is what this Forum is - personal experience.
- I try to support by ACTUALLY CONSIDERING YOUR situation - not just respond / list my own experience. Everyone's situation is unique and individualized to degrees, clearly. There are a lot of variables to consider.
Often asking more questions for someone to consider seems more helpful to me, for the writer asking. This is usually what I try to do.
* Unlike some others here, I would not relegate the decision making to his spouse although this may be the ... ethical way to go. I think her projecting what is best for him may not necessarily be. If she is of sound mind, it would be respectful to ask for her input although ultimately, I feel it is you/family decision.
Gena / Touch Matters
You mention that your grandmother is already in a retirement community, and apparently there can be skilled nursing there? Give us more details about the community.
Usually communities fit in one or more of these, some have multiple layers:
Generally private or non-profit places where you pay:
independent living - a senior community that may provide meals, activities, but usually no aides to help with activities of daily living.
Assisted living - similar to the above, but provide help with activities of daily living. Usually nursing care CANNOT be provided at such, but there may be exceptions. Usually people pay themselves, but some may take Medicaid.
Memory Care: as above with Assited living, but geared more to dementia residents.
There are are nursing level facilities - which are actual SNF/ "nursing home", LTC facilities. These can take Medicaid funding.
These may not be nice, and usually medicaid funded patients are going to share a room with one or more people.
So if it is : home versus SNF/ nursing home - then staying home may well be preferable.
If it is , private pay assisted living/ senior living - depending on the place and quality of service, it can well be superior to being at home. especially if a spouse is in the same place.
thats my opinion...
How often do they see one another? How long has GM been gone from home?
So I would consider that you have one successfully in facility care and one not so happy with the chance of having two not so happy if you move GP in to GMs facility.
Since money isn’t a problem and GP loneliness the issue, I would consider hiring GP a companion. Someone to come visit daily. Have lunch or dinner with him, take him for a ride, enjoy a few hours of tv. Maybe a walk in nice weather. Try that for a month or two and see if his mood improves. You could try more than one. Susie on M, W, F and Sam on T, T and S. Family on Sunday. Whatever you could work out.
Dementia is progressive and he won’t remain the same. Plan to revisit the situation every quarter if not every month. Make sure the person is a good fit and you have a proper contract. The elderly are easy to prey on regardless of where they are living. They are vulnerable and fragile and precious and sometimes lucky to have family working to keep them as content as possible.
Let us know how things are going and what works for all concerned.
My 96yr old grandmother is doing great in one. She's mentally able to manage herself just fine, but has some physical limitations. Her facility offers swim classes which she does, and she likes to socialize.
As a contrast, my mother-in-law has been in a care facility near our home for three years now, and it's just been a constant source of stress for us. She had a series of strokes 4yrs ago, that has made speech difficult, diminished her mental ability, and she's mostly bed-bound. We have to check in on her daily, and when we can't we have to hope that nothing happens because something always happens if we aren't watching her like a hawk. She needs help with eating, and sometimes the care workers will help her, and other times they put a bowl of soup in front of her and leave her to struggle to get any of it into her mouth. A few months ago, we had an incident when a newly minted care worker didn't understand that my MIL is just not able to help get herself from her wheelchair to her bed, and the care worker lifted her improperly causing them both to fall and get injured. She wears diapers, and we've arrived to find that she's been sitting in a soaking wet diaper and bed for hours (based on the dried outer circle of urine on her bed pad) because of short-staffing.
These are just a few of the issues we've dealt with since she's been there. This place is the best we could get that's close enough for us to monitor her regularly. Some of the nursing staff are great and they really care, but they're over-worked, so they do the best they can with what management is giving them.
All caregivers / providers at facilities should be trained well. This isn't the situation everywhere. Certainly not in a nursing home where my friend had to go. When paying more, one would expect more attentiveness / and training of staff.
I think this writer needs to assess the care facility carefully - and ask for references (family members who have loved ones there) - everyone writing here may have a very different experience (certainly I could write a book - I contacted the licensing board of the nursing home ... after many months of ongoing issues).
If I were the writer, I would go several times to a facility - sit and watch how staff interact with residents, ask administrator how they handle issues that come up, how they train their care providers.
Short staffing is an issue for many care facilities, however a resident (family) can hire outside care givers to supplement as they feel needed. In this situation, they can afford to do that.
Wet disposable underwear, improper lifting from wheel chair is inexcusable. This is the type of situation I would report to the Umbudman, if not the licensing board. Gena
Some facilities are horrible. SOME.
Not ALL.
Sometimes “keep them in their house no matter what” ends up ruining an elder’s life more than any nursing home could.
I can’t speak to OP’s situation, but it doesn’t help when people paint all facilities as hell holes.
As with anything, you need to investigate and shop around for a proper facility.
Talking like this is potentially hurtful.
Some facilities are expensive and some are well maintained.
Some care providers are excellent; some are not.
Nothing is cookie cutter. Research and observation is necessary.
She may not want that. Your grandmother may be enjoying her final years socially and does not want to spend her days sitting with your grandfather inthe memory care. Talk to her.
He's her husband. Let her decide where he goes or if he stays in the home.
If you are comfortable with your grandfather in a zoo, warehouse, or prison like atmosphere, then a move to a facility would okay. Okay - let's say 1 in 200 are actually caring, attentive, and compassionate. If you can find a really good one . . .
Presumably, your grandmother took a vow during her marriage ceremony - "'til death do us part." If so, now she wants to abdicate that vow? Just sayin'. :-\
The decision about home care comes down to financial ability to provide adequate care and safety, the needs and best interests of the person being cared for, and the human resources (family and caregivers) available to provide safe and effective care. Someone has to be willing to oversee this care - and to step in if a paid caregiver is not available for a shift. Someone his age, with dementia, cannot be left alone for extended periods of time.
Since your family is already doing home care, you likely know all of this. Go into your decision eyes wide open and make the best choice for him and you.
Some questions to ask would be
" what has he expressed as his wishes before being cognitively challenged?". Can he have 24 hour live in support at home, which is what home care will require? What defines " quality of life" for him , both before illness and now? Speak with his PCP and get level of care needs assessment from the PCP for your grandfather. Have Geriatric Specialist confer with you and family.....
These are starting points.
Good luck
I'd choose moving grandpa to the same facility as grandma so they could see each other sometimes. You don't really know that he loves being at home. He might love a place where there's more going on also.
Family caregiving can go on and on. It's easy to be exhausted by it even if you are not doing the daily hands-on care. I'm not only thinking of grandpa but of all the rest of you.
I made the mistake of putting my mom in SNF because I didn't know any better, and because she didn't need any actual nursing other than getting her pills handed to her, she was terribly neglected by the staff. I moved her to a memory care facility, and she did much better.
Are you assuming these things ?
I would most likely encourage him to join his wife . He’s 90 and who knows how much longer he will recognize her . Perhaps he would adjust better to a facility while he still can recognize her, even if they aren’t necessarily living on the same unit. The facility can arrange visits and sometimes meals together for grandma and grandpa .
What does your Grandmother think of this question, either pro or con?
Sounds like grandma made a very wise choice! Why didn't Gpa go along with her?
The costs involved would be less (I'm guessing) if you add grandpa to the assisted living! I'd probably be of the mind to lean on him pretty hard to join grandma at the place where she lives.
Ask grandma what she thinks. Would they be living in the same rooms? Does she miss him, too?
If gpa cannot make this decision himself, who is his POA to help facilitate something for him? Time to step up and do the right thing by gpa. I wouldn't hesitate to move him in with gma, or at least in the same NH.