I remember being very confused by the terminology at the early stages of thinking about homes. My understanding is that "Care Home" is a bit of an umbrella term
for both "Residential Homes" and "Nursing Homes". Residential homes do not have nursing care for those with more complex health needs and often dementia homes might
fall into this category. Although, each home is porbably fairly unique in its services and could indeed offer nursing care, so it needs checking with each home.
Nursing homes are like the top tier for needs homes and will often include many residents with dementia, but also other complex health conditions. My only experience
has been with a nursing home, but much of the info below will apply to all sorts anyway, but I'm saying so you can bear in mind.
CARE HOMES TIPS
I strongly suggest you do not shy away from the care home question, and seriously consider the possibility for the need for this to happen possibly 'one day' because
I think it's much worse to end up in this position drastically unprepared. Of course it's not what we want, but just sometimes, it's a necessary step and not for the
reasons we might think. Many well intentioned carers can say to themselves "there's no way I'd let my spouse go into a home" as if it was some kind of judgement or
questionning of their love for them. Unfortunately, sometimes, the circumstances take over and we're unable to avoid them. I don't mean to scare you, but this is just
a fact and I feel qualified to say this having been in the situation myself. No-one who knows me well would dream of questionning my motives for making this decision.
But also, it doesn't have to be as bad as you think, I'm very happy to say! We might naturally assume that a care home is a bad thing, but I'm pleased to report that
for us, this hasn't been the case.
A brief overview of my situation: I never wanted to need a care home for my hubby and was happy to be a
dutyful and loving wife as long as needed at home, happily at some expense to my own freedom, for as long as needed. It was what I wanted to do. I kept upping the
help we received in terms of daily care under the Direct Payments scheme that meant I was able to personalise care and hire carers for 1-2-1 care on an increasing
basis, when needed. The turning point came when his symptoms became too difficult to manage at home at any time. I held out for as long as I could, and resisted
family and friends and professionals suggesting the need for a care home for as long as I could because that was what I wanted. BUT, I did this on the basis I was
always honest with myself and would not let the balance tip so far that the detriment to my own health was unfair, and that covers physical, mental, emotional etc.
But also, his symptoms did need specialist care, so it was best for him too. The good thing for me about being this way was that I had no regrets or guilt when I had
to make the decision because I knew I had done my best, and now this was the 'new' best that was needed for both of us. It has been true, for us, that we now have much
better quality time together than we had at the end of our time at home. It's not the end, it's just a new phase of managing, together.
The point to remember
is making this decision will be a mixture of factors about both you, and your loved one, and the elements of the illness that are majoring, and how well you can both
cope with them along with any support services. Some community support mechanisms can work very well, but likewise, there may not be any suitable ones whether down to
funding problems or just relevance - for some symptoms there is nothing I could think of that in an ideal world would help, except maybe being a millionaire, buying a
large house with a small wing to make our own care home and hire my own highly trained staff!
Choosing a Home:
I began looking a few months before I needed because it helped me to feel more distant from the decision since it may not
even happen: I was 'just looking'.
ask friends if they have any experience (especially helpful if you attend any carers groups)
ask professionals for advice on what's available. There weren't any suitable places for younger people when I was
looking, but there may be more now.
look for good places for you to sit when you visit - our place had 2 communal areas, and 2 smaller quieter areas, which I found were
crucial to us - we needed privacy on our visits as we adapted in particular. Now, he is in a more suitable bedroom that I have been able to make like a bedsit so can
ensure privacy and we can sit just as if at home, watching tv, and we have our own fridge for drinks etc.
visit as many places as you can, and do not announce your
visit so they do not put on a show (most homes expect these unannounced visits, so it's not a problem)
do not be distracted by decor - I have heard many people say some
of the best homes are not the most pristinely decorated ones (personally I like ours because it has carpet in many areas as hard floors can be over clinical, although
useful in some areas like dining. Another one I visited felt more like a hotel - not good for ongoing.)
put some faith in your gut feeling - it should feel like a real
home as far as possible by being warm, welcoming and have a nice feel to it
smells are sometimes unavoidable temporarily, but generally homes should not smell bad
ask about activities that may be suitable for your loved one to take part in
ensure they are keen to help your loved one feel it is their home as much as anyone else's
there - the staff work in their home, not the residents dwell in the staff's workplace
see if you can detect staff relationships - I had a strong sense that staff got
on well with each other, as well as caring for the residents, and a good indicator is how long the current staff have worked there (ie a high turnover wouldn't be a
ensure you see one or more of the bedrooms, and find out about en suite etc
also ask if you're able to personalise the room with your own furniture etc if you prefer
personalise the bedroom as much as possible with your own furniture and belongings and particularly pictures
whilst the home should ask about personal
preferences etc I also prepared some of my own info to help staff get to know my hubby, using the Alzheimer's Society "This Is Me" document as a template (search
online for this, or email me for a copy)
I also put up some signs in his bedroom (he couldn't read anymore so I hope he didn't feel this was disrespectful in any way),
with some hints and tips about how best to speak to him etc, to help the large amount of staff that will be getting to know him over time
label all clothing and items
you don't want to lose (eg I printed tiny labels with his name on to stick under ornaments, on toiletries, dvd's etc)
there are some great ways to label things these
days including: permanent markers, washing resistant markers, iron on labels, easy fix clip on labels to attach with a pin-like safety clasp, button labels to attach
with a hand-held gizmo, name stamps (like an address stamp, useful for on white socks that you wouldn't normally label). I suggest you google for such things to find
the best prices (but I used NameTags4u)
on the day itself is probably bext decided how to proceed with your own knowledge of your situation but I will share mine if you
I've heard various advice about visiting patterns but I found that to go regularly the best thing for us
it will be a difficult decision, and move, and it may take months for the anguish to subside, but it will
visit as often as seems suitable for you both - balance both your needs and requirements - for me it helps me to cope with the situation knowing I am doing 'what'
I can, 'when' I can, and have not just abandoned him. I also have family and friends who will help by visiting him.
if you can, still go out together to cafes, theatre etc.
have a good relationship with nursing staff, care staff, and admin/management - I feel like they're part of 'our' family and having a good rapport is great
get to know other regularly visiting relatives, who can be a good source of support - I have one friend and we text each other as we visit at different times,
and can say how our loved one is
keep a close eye on things - you have not given up caring for your loved one, it's just different. A good care home will want you to
be part of their ongoing care and will appreciate your input
attend relatives meetings (meeting for relatives and management) - if they do not have these, suggest they start to do so - having a monthly meeting to air general queries and concerns as well as positive feedback is a great way to
communicate without having to make a purposeful effort, but also...
don't let concerns build up - chat to staff ongoing with any queries, and in particular, the home
manager who will hopefully welcome your input (hopefully you will know the balance between raising genuine issues and being a pain - ie don't moan about little things
that aren't actually a big deal)
expect difficult days - for them, and for you. No set of circumstances whether in your own home or in a home will take away the fact
this illness is difficult, and painful, to live with, in all ways.
I have always taken in occasional treats for care staff such as sweets, fruit and soft drinks - it's
not an attempt at a bribe but more recognition for their good care and sign that I appreciate them. Gifts for individual carers are a big no-no and likely not allowed,
when feeling guilty or worried, as yourself "is there anything else I could reasonably do to help? am I doing my best?" and if so then you must not punish
life apart can be very traumatic at times, especially for spouse relationships, but this is just a necessary part of the position we are both in and there was
no other option for us. Contrary to what I thought possible, he actually is better off there, now.