care home or stay at home?

[Numbers3]

my dad has alzheimers and has been living at home with home care (not enough). he recently had a fall and ended up in hospital. I am being told he cannot come home and that he needs to go into a care home (although I have not seen any assessment on this). he is certainly confused and does struggle but i need to know i am doing right by him and that the care home is the only option. How do I know? He thinks he is fine but he is confused but has good and bad days so sometimes he "presents" quite well. i think that following some respite he may be able to come home with additional support but family members disagree.

I know at the very least he will need respite - but the homes we like are all full and so its corporate type or a smaller private home for the interim - the corporate one has a dementia wing which i don't like the sound of and he can only get to the garden if escorted but it does have good food, comfortable beds a decent ish staffing ratio and lots of activities which may draw dad out - the smaller one is a bit more haphazard but he can sit in the garden at will. any views? both have a "good" report but not very illuminating.

 

[Chemmy]

Hello and welcome to TP.

A friendly welcoming atmosphere would be top of my list. For me, it was all about the staff - their caring, their kindness, their compassion. I doubt if your dad will be as aware of his surroundings as the family are.

 

[jaymor]

You need to know the reasons for their decision on a care home after discharge from hospital. Once you have the information then you can talk it over with the family.

Care packages can be very good but if your Father lives alone then he is not going to be covered for 24 hours a day. Get the information about what care they say he needs, what care can be provided and how the other time can be managed.

It is not easy and I wish you luck,

Take care.

 

[Jessbow]

How much home care did he have before? 4 visits a day is really about all that anyone gets.

Which family members have the most input with his day to day living? to me they have the most valid opinion, not those that are less *hands on*

Personally I don't see *has to be escorted to the garden* as a negative, partiually following a fall/falls.
Larger homes have their advantages/disadvantages as do small ones. I'd opt for a bigger one every time- more going on.

 

[Chemmy]

My MIL ended up going to a CH straight from her second stint in hospital because of falls at home, rather than because of her (at the time, mild) dementia.

She spent hours lying on the floor after one fall in the early hours and she told us later that as she was lying there, helpless, she thought that was 'it'. Don't underestimate how traumatic falling can be when there's no-one around.

 

[Beate]

If a cash-strapped Social Services that would probably rather have him at home with a care package agrees that he needs a home, I wouldn't dismiss that out of hand. What don't you like about the dementia wing? Just the name? Have you visited it and checked out all other aspects of the care home? There's a good checklist somewhere, I'll find it in a minute.

Edit: here it is.
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=150

 

[canary]

How much care do you think he is going to need? As Jessbow says, 4 visits a day is usually the maximum.
If he is living at home, then you are not going to get 24/7 cover and if there is a risk of falling it sounds like this is what he really needs.

Have you visited the care homes? There are pros and cons to both corporate and small private homes. To me what is important is what the caring staff are like and how they respond to their clients. I dont know what stage your dad is at, so I dont know if a dedicated dementia wing would be better or not, but in my experience the staff usually have greater knowledge of dementia, but there is usually less going on.
Dont worry about the appearance too much (so long as its clean) as your dad may not see it the same way. I know someone who insisted that her dad went into a particular home as all the bedrooms had views over a lovely garden and he could go out into it whenever he wished. In the event, he couldnt care less about the view and never went into the garden!

 

[Witzend]

If you think it would be important for your dad to be able to go into the garden, then I'd certainly choose that one.

As regards 'home or care home' I think it often boils down to whether the person is really safe to be left alone any more. Even a hefty package of carers or family calling in will still leave several hours in the day, and usually all night too, when the person would be alone.
There so often eventually comes a point where 24/7 care and supervision are needed. I think many of us probably put it off longer than we should, because it's such a huge and heart-searching decision, until reality bashes us over the head with a sledgehammer and we know we've just got to get on and do it.

 

[irishmanc]

Yes, personal safety is a big aspect. At some point, most people with Az will need 24/7 care which families often cannot provide. We just have to resign ourselves to this and try not to feel guilty about it.
Staff are definitely the most important aspect when looking for a care home. No care home is perfect but the right staff will make up for any other deficiencies.

 

[Roseylee]

Hi Numbers3,
We were very anxious about putting Mum into a care home in January of this year. Like you she had only had 2 x 15 minute visits a day from carers who just seemed to pop in and do no more than check she was still alive! They didn't watch her eat, and sometimes didn't make sure she took her meds. We family lived 2 hours away, so were unable to check on things other than phoning daily. Our visits were full of angst, worrying about raw ready meals in the fridge, things that had gone missing, and we would rush around doing shopping for her, and driving a 2 hour journey home wondering what on earth she was getting up to as soon as we had left. She ended up in hospital last November with a stomach bug and we got her into a care home in January without her going home, in a different county near my sister. We were dreading doing it but we have never looked back. The care home is such a cheerful place, and has a dementia specialism. There is loads going on for Mum to join in with, there is a GP assigned to the home so her medical needs are attended to, there are other people around to talk to (makes you realise how incredibly lonely she must have been at home), there is 24 hour care. My sister who is local visits frequently, and we have peace of mind. We dreaded the decision, but now are at peace with ourselves that we did the very best thing for her, even though we are having to sell her house to pay for the care. It was a no brainer. Our visits to her now are full of laughter and cuddles (even if we do have to repeat 3 things over a 45 minute visit)! In short, the decision was agonising, but the relief huge. For her and her family. Good luck. x

 

[canary]

Thats such a lovely positive post Roseylee

 

[Amy in the US]

Hi Numbers, and welcome to TP. I'm so sorry to hear about your dad. This is a difficult and stressful time for you and your family.

I wanted to reassure you that by being concerned about your father, and what is best for him, and that his needs will be met, you are indeed doing right by him. If you didn't care, you wouldn't be here asking for advice.

Please do not think you are a terrible person because a care home is being considered. You're not. You're a caring person trying to do the right thing for your father, who has a terrible disease. This is not your fault, it's the fault of the disease.

Perhaps if you had more information from the hospital/doctors it might be easier to see what the options are, in terms of providing the right sort of care for your dad. As others have mentioned, if someone is a fall risk and needs 24/7 supervision, that is difficult to provide at home. It's also important to consider if the home is suitable and safe, i.e., what about stairs, grab bars in the bathroom, proper lighting, removing anything hazardous, et cetera.

In addition, might he need:

-medication supervision/dispension
-meals provided, and making sure he eats
-help with bathing, dressing, and personal care
-help with toileting
-assistance with other medical conditions or needs (dialysis, wound care, eyedrops, you name it)
-assistance with opening mail, paying bills, and managing finances
-cleaning and laundry
-someone to do the shopping
-transport to appointments

And the list goes on. I don't mean to overwhelm you, but at some point in dementia, our family members need help with these things. You don't have to personally do it all yourself, of course, but arrangements do need to be made.

It's also difficult because of course the person with dementia will almost always say they want to stay at home, and that they are "fine." And of course the thing with this horrible disease is that they are not fine, but they do not know they are not fine.

Sometimes an illness or accident, especially when it leads to a hospital stay, is what has to happen to get the person the care they need. I live in the States so our system is different to yours, but that part is still true. If my mother hadn't been sent to hospital (after being found wandering, disoriented, no coat in January, having fallen), and then the hospital said she needed a care home, she would still be living alone at home, insisting she was okay. In reality, she couldn't take her medications properly, which caused no end of problems. She wasn't eating or bathing or sleeping, the house was filthy and cluttered, and she was spending most of her time alone, isolated, and anxious. She was barely paying the bills and had started giving money out to every "charity" that called or knocked. She was still driving and I was terrified she would kill herself or someone else. But she insisted she was fine!

Now she is in a care home 15 minutes from me, instead of 2 hours, and she is SAFE, her medications are given to her on time, she eats 3 nutritious meals a day, and she always has someone to talk to. Her anxiety is gone. Did I want her to go to a care home? Emotionally, no, but practically speaking, yes. For the first time in years, I'm not worrying about her safety and health every minute of the day.

Sorry for the long personal story, but it gives you an idea.

There are members here with family who live at home, with carers, and others who provide the caregiving in their own homes, as well as those of us with family members in care homes. There's lots of information, advice, and support available. Please don't hesitate to ask. No one here will judge you about what you're experiencing. If you get a chance, please come back and let us know how you get on.

Wishing you all the best at this difficult time.

 

[Amy in the US]

Witzend, I just had to reply, I loved your comment about "until reality bashes us over the head with a sledgehammer." It made me smile for the first time today. Some days I really feel bashed! Thanks!

 

[Essie]

Hi Numbers3, I would also be a vote for care home over going home - as others have said the value of 24 hour care 7 days a week come rain/shine/snow or whatever is huge and the things that worry you about Dad going into a home may not bother him at all - and, again as others have said, the company, activities, GP visits, monitored eating/medication/bathing/walking - all of these are ticks in the keeping him safe and well box and, hopefully, improving his quality of life, especially if, as you say, he still has some better times when he could really enjoy things - that's a lot of ticks against 'keeping him at home'. And when you and the rest of the family visit - which can be as often and for as long as you like, (it isn't hospital!) your visits will be all about enjoying being together rather than taken up with care issues, worries and chores. I'm not trying to paint an unrealistically rosy picture, of course it won't be perfect, nothing is, but the level of care achievable maybe has to be your best guide to making your decision.

And I would also agree with Jessbow that being escorted to the garden rather than going independently is actually a good thing - falling indoors is bad enough, falling outside on a path - Ouch!

 

[daisydi]

Hi, we recently had to place my mum into a care home and looking at her now it was really the best decision for her. I think we all try to fight it as long as we can as there seems to be such a stigma about people going into care homes but sometimes it just is the best place for our loved ones. I was fighting it all the way as there wasnt a room available and I was absolutely convinced that she should not continue to share the room she was using for respite but needed a room of her own. The care home staff said that she was very happy sharing a room and it would probably upset her if they moved her so I gave in and let her stay. Looking back I am so pleased I backed down. She only uses her room to sleep in which means she is always in one of the lounges with other people. Hers is a small home, just 17 residents and it is perfect for her. We tried some of the dementia day centres but she was not happy going to those places as I think it was far too noisy with too much going on. Everybody is different and has specific needs. Her home is not just dementia but a care home for the elderly so there is a nice mix of people, some have medical problems, such are just frail and some have dementia. It suits my mum as it is like a large family home. I think you should try to consider what your dad would prefer, large or small, quiet or noisy and go for the one that feels right. I always feel happy seeing my mum where she is. The staff are very caring and chatty and the atmosphere just feels right. We are very lucky to have found this place for my mum and even the social worker said that we are so lucky to have found the perfect place for her. So she hasnt got her own room but she doesnt know or care and an extra bonus is that it is cheaper! Best of luck with your decision.

 

[stefania]

Hi
As we have all said it is a big decision but for most care/nursing homes are a good thing. it is our mindset that we have to change. 24 hour care doctors come quickly and nurses there if you're in a nursing home. I can spend all day with my dad and even though I do help him sometimes with the toilet that is my choice, I don't have to I just spend a happy time with him without all the stresses of having to do the caring bits. use the time when you are with him as memory times is certainly better than worrying if he has eaten or taken their medicine. I have happy times instead of some stand off times because I wanted to get my dad into bed and was tired. I certainly think there are more pro's for CH than against but go and visit them all. It's like playgroups for your children go with your gut feeling of what you know you and your family member would be happy with. good luck