when is it time to go into a care home?

[Fozz]

Hi everyone, have just spent 20 mins reading all the messages, they all help a little bit! My question is, how do you know when the time has come for permanent care? My Dad has vascular dementia and is cared for by my step-mum who is partially sighted and has recently been ill. She is doing her best, but Dad is going downhill faster and faster and my stepsister and I are worried that the stress will make her ill again. The thought of Dad going into a home is awful as he hates the very idea of it, and calls them " loony bins full of imbeciles!"
My stepmumdreads making this decision, as he blames her for everything that is "done to him" i.e day care. Do any of the health
care professionals have role in saying enough is enough, or is this something the family have to decide?
Must go now , best wishes to all

Fozz

 

[janemary]

care home

I'm afraid the decision is left to you. However, Consultants (I presume your Dad has seen one) will sometimes say that "the patient has all the criteria to be eligible for full time care" and then you decide when the time is right. My children were immensely supportive in saying that it was time for my husband to go into care so I could begin to live a little after the years of caring for him. Because we are both relatively young they could see other couples of our age going out, having holidays etc. and wanted me to be able to do so. However, even when the patient goes into care the partner is not really "free". But it takes the physical burden away - just leaving the emotional one to be got through. I am sure that you and your step-Mum will know when your Dad is getting no great benefit from being at home. There comes a point when, however caring people are, the sufferer reaches a stage when he is agitated/uncomfortable and distressed even in the familiar surroundings of home. Don't feel guilty, don't let your step-Mum feel guilty, it is the illness that takes the people we love away from us - it is not us abandoning them.

 

[Charlie]

Hi Fozz,

Tough decision. We are in a similar dilemma as my mum is caring for my dad at home and it is getting harder by the day. The lack of regular sleep and the pure hopelessness puts a real strain on her. The idea is to keep dad at home for as long as possible making sure that it does not have a detrimental effect on my mums health Well that's the theory but in practice it hard to tell how much the stain is effecting my mum's health.

We are looking into respite care and other options to take the strain of mum. But putting someone to care has got to be one of the most difficult decisions that you make in your life. Mums GP has been pretty supportive and she provides a lot of sound advice but at the end of the day only individuals can access their situation full.

good luck
Charlie...

 

[Brucie]

I suppose that I was fortunate in that Jan had a bad accident while in the care of the assessment hospital, and that made it impossible for her to return home.

I had visited the fateful day in my mind many times though, and I found I would need to step back from myself and ignore my own feelings and simply ask myself "will Jan be better cared for than I can now do?"

Yes of course they mind when we leave them in a strange place, but it will do them no good at all for their partner/carers to grind themselves into the dust. That, by the way, is easy to say, but is more difficult in practice. I was quite prepared to grind myself into the dust at the time. In retrospect I can see that would not have been good for Jan, short-term, nor long-term, since I am much better able to give value for her from my visits now.

You'll never make a more difficult decision. Good luck.

 

[Geraldine]

Hi

Like Brucie, the decison was taken out of my hands. Although because of Mum's deteriorating condition I had mentally decided that maybe I could manage another 6 months at home. Anyhow on our usual caravan holiday last year Mum went downhill like a boulder off a mountain (change of routine I suppose) culiminating in a catastrophic episode in which she kicked and hit out and was out of control, difficult to believe ina frail 80 year old but terrifyingly true. A night in the local A+E a transfer to home and after Mum spent 5 weeks in hospital finally getting a correct diagnosis of lewy Body Dementia I told all concerned i could not cope at home. Months of sleepless nights had finished me off. GP extremely supportive as were consultants but I had to be firm and at every opportunity said that Mum was not coming home which was heartbeaking. The worst few months of my life. I had good friends to support me.

I wish you luck

geraldine

 

[Fozz]

Thanks to all who have replied , it is such a help to hear from people in the same situation. Whenever I have spoken to a Social worker or psych nurse I always feel they are just trotting out standard answers and generalisations which don't help at all. Am going to a social services review of Dad's care plan tomorrow, my family and I have decided to get him put onto the waiting lists of care homes which sound good, incase things suddenly take a turn for the worse. As you all say this is a very difficult decision to have to make , but being able to discuss it in this way has been a great help,
best wishes to all
Fozz

 

[Fozz]

Hi everyone,

Just an update following the care review today, which was really helpful. Also got a chance to see the daycare place where Dad is, it's very good and the staff are really committed to helping him settle in and feel at home. The social worker and CPN were also very supportive, so I take back what I said about them in my last post!. Anyway we got another day of daycare, plus some respite care soon and a support worker to help my stepmum with things she needs help with because of her eyesight. We have also persuaded her to start going to church again while Crossroads sit with Dad. Things look better now,and we hope that with this added help he will be able to stay at home for the near future at least.

Best wishes,

Fozz

 

[april]

when is it time to go into a care home

Dear fellow carers,

From reading all the posts it is clear that we all fight this option to the bitter end - when we have no other option left!

I am facing this terrible decision right now and it is truly breaking my heart. My husband Brian has been in respite care for the last three weeks and I am considering it longer term as I feel I could not cope any more caring at home. We are fortunate that we have found a very nice Nusing Home with very caring staff and they are very pleased with the way he has settled in. He is no more agitated than he is at home, he has more room to wander and all his needs are cared for 24 hours a day. The Home is in a lovely setting - a converted large country house only 2 miles from our home and we visit every day. Our daughters fully back any decision I make but it is breaking their hearts too.

Yes I have had a physical rest for three weeks but my mind is in turmoil. I miss him terribly and dread going into an empty house. I know that I will have to adjust and it does help reading how you all have coped and are still coping. I find this forum a great support and help. The advice from fellowcarers is the best advice of all because their knowledge is from their own personal experiences.

Thinking of you all as you all soldier on.

 

[Norman]

When is it time to go into a care Home

April
it made me so sad to read your last posting I can only imagine how you feel.
I dread the thought of going through what you are going through now,but it will be the next heartbreak for me, in the not too distant future.
I am thinking about you as are many on this site,best wishes
Norman

 

[Nel]

Hi April

It is the most difficult and heartbreaking decision my brother and I have ever had to make. We decided to place Dad in a care home after hours, days, weeks of soul searching and tears. My brother lives in Spain and I travel up and down the country with my job so could not look after him 24 hours a day. We came up the all the sensible reasons why he should go in a home but 4 years on I still feel guilty, although he is very well cared for. My mind is also often in turmoil with it all, but remember, you are not alone in how you feel. I guess most of us that have trodden that same path feel the same. I send you my best wishes and enjoy the special times you can still have together.

Nel

 

[Sheila]

Hi April, I am in a similar situation, my mum is in hospital, depending on whether she can eventually weight bear, I may be able to have her home or not. I fully understand what you are feeling right now, your torn in a million different directions, what ifs, maybes, perhaps etc. its a nightmare. The only consolation is that as the illness progresses, if the time does come, our loved ones are mostly unaware. It is us that do the crying I'm afraid.

 

[John Bottomley]

Benefits and consequences

I guess that the most helpful way of thinking this through that I've heard was from a Macmillan Nurse speaking on this topic.

Her view was that staying at home, and the independence there, is sometimes over valued. She felt we should think it through carefully and make lists to see how loved ones are best served. Her concern was that family often feel that staying at home is best, but for some people (especially living alone) it may be that their needs and quality of life are better met through other settings.

For example, make a list and write down all that's good about staying at home. Independence, having time to do whatever you want, when you want, close proximity to friends/family, familiarity of the environment, able to have a menagerie of cats and dogs . . . whatever is important or positive about it.

People can easily bring to mind the harder elements, and it's then worth writing a list about how things may change from moving in to care. Reassaurance of 24 hour staff being there, company with others, no stress over sorting bills, meals provided regularly, freedom to still come and go with family, retaining personal space, having expert input at any hour of the day, not having to drive or go to shops, having all laundry done, having 3 shifts of people looking after things rather than a spouse having to do it all, having help with personal care 24 hours a day, not being alone . . . whatever is important or beneficial.

Don't wait until there's a crisis.

At some point, the practical benefits from being at home will be less than the practical benefits from being in care. Her advice was wait until that point, then consider a move in to care.

Also, nothing's written in tablets of stone. A point she made well was that just 'cause you go in to care doesn't mean you can't come out. Sometimes people have very distrubed behaviour as dementia progresses, so need care. Later in the illness it's more advanced and they're more settled. Especially if there's no night time disturbance, re-visiting the decision of being in care/at home with family is then sensible.