How to cope when a parent suddenly becomes incapacitated?

Tips

Its a very good idea for anybody that is considering a nursing home to visit the HIQA website and read all the inspection reports that have been compiled for the nursing home in question. These reports will tell you how often the nursing home was inspected, if there is or was ever any problems identified following inspection - whether these are problems that are ongoing or once-off and whether the problems were since rectified following the last HIQA inspection.

Its always a good idea to visit and inspect the proposed nursing home yourself and do it on more than one occasion and I cannot stress enough it is important to do it at different times of the day. An unexpected visit should ideally be done mid mornings, at meal hours, evening and at nighttime. Visiting at different times of the day will allow you to see first hand how the nursing home operates at various points in the day, you can observe the different staffing levels, and also whether there maybe a practice where residents are put to bed quite early-on in the evening....

Do not just visit a nursing home at an allotted appointment time that the nursing home will give you - its like an inspection - if they know the inspectors are coming they are obviously going to be on their best behaviour and putting their best foot forward so to speak. No nursing home should have any great difficulty with a relative viewing its facilities unexpectantly - within reason that is!

Ask to see what you want to see in the nursing home, and not just what they want you to see!

In addition to the above I would be asking questions about;

1. The staffing in the nursing home - are they regular nursing and care assistants and do not be afraid to ask them out straight does the nursing home rely heavily on agency staff (if they do there could well be problems down the road with the continuity of care that your relative may receive). Familiar staff who know the residents and in particular their needs is important in delivering continuity of care. Is there is a high turnover of staff, if there is, ask them why they have a high turnover of staff, there can be many reasons for a high turnover of staff.
2. How many care assistants in comparison to staff nurses are there on duty per shift per unit and how many residents would the staff nurse be responsible for and what’s the degree of dependency of those residents?
3. Ask about the care planning and the assessment of needs of its residents - how often are care plans reviewed and updated and by whom?
4. Does the nursing home engage in or provide social/recreational activities for its residents.
5. Is there much interaction between residents (observing the dayroom will tell you multitudes - are residents sitting before a TV all day), how much interaction do you observe between residents and the nursing home staff – do you see structured activities that staff are partaking in etc.
6. Have a look at the bed rooms - are residents given much privacy - are males mixed with females - how far is the toilet from the bed - and visit at night when residents may be in bed.
7. Are there accessible toilet and bathroom facilities - do they seem maintained - are they in or near the bedrooms and day rooms?
8. Are residents given the opportunity to express and maintain their own sexual and personal identity, if you are visiting during day-time are the residents fully dressed or are any still in nighties and their dressing gowns?
9. Do not be afraid to ask about the arrangements that are in place for meeting the personal hygiene needs of your relative - are the rooms en-suite - is your relative independent and self-caring - if your relative requires assistance for personal hygiene does the nursing home have given day's for showering/bathing each resident, and how would they deal with a situation if its the norm for the resident to take a daily shower or bath while they were at home - how flexible would they be in accommodating the personal and individual care needs of your relative – or are they completely rigid?
10. Visit the kitchen area where the food is usually prepared.
11. Are there a variety of menu’s and are they nutritionally balanced?
12. Are there rules that residents must observe in the nursing home - do they seem rigid or reasonable?
13. Are the staff in the nursing home vetted?
14. Will they let you have a look at their policies and procedures manual - what's their policy on suspected instances of abuse for instance - can they and will they tell you?
15. Do you see any residents being restrained in any way?
16. Does the nursing home have any established system for advocacy – do the residents can have any kind of input into how their home is being run or the type of facilities and the kind of activities that they would like to see being provided for them?
17. If your relative has special needs does the nursing home have the facilities, expertise and the resources to respond to your relatives needs?
 
Also check their fire safety and evacuation plan - how long since they had their last fire drill? Do they have complete evacuation or phased evacuation? If multi-story building, what is the procedure for getting people down stairs?
 
HIQA would be already enforcing the points which annet raised.
To be honest, if you were to raise all of those issues with the nursing home you could come across as being 'difficult' .
As regards No. 15, residents are sometimes restrained for their own safety and this is not necessarily a bad thing. In all cases of restraint, permission will have been sought from next of kin and the GP.
I would definitely check the nursing home out on the HIQA website, but once in the nursing home I think it is far more important to get a feel for the atmosphere of the place, and the interaction between staff and residents.
 
Thanks everyone, there is a lot of food for thought there. Up until this weekend, I had been almost solely focused on one particular nursing home, which is privately run. But now I feel my aunts and uncles think that the level of care & continuity of staff would be much better in a public nursing home, and now I dont know what to do.

The private home that I looked at on Friday (unnanounced visit) was purpose built only a few years ago, so it is spacious and clean etc. It has a new unit for people with particular needs & my Dad being a stroke patient would be suitable for that unit. They have a physio on staff & residents have scheduled appointments with the physio every day Monday to Friday if they are able for it.

It was a lady from India who showed us around the home. There is room for 15 residents in the unit, and another 40 beds in the 'regular' area. At the moment there are 10 patients in the unit, with 1 nurse & 2 care attendents during the day time, and 1 nurse and 1 care attendant at night time. This seems quite a low staff/patient ratio to me - is it, or am I just clueless? Most of the bedrooms in the unit are single, but you can opt for one of the 2 doubles if its available. All are en-suite & have a camera/are monitored using a screen at the front desk of the unit.

I have heard good reports from neighbours etc. who have known people in there. But no matter what way you look at it, its a long way from what he was used to at home :(

The residents were all sitting around in the day room in the 'main' section of the home when I called (late afternoon) and I admit that I hate the idea of them just sitting around doing nothing.......there is entertainment & various therapies in the daily schedule according to the nurse. The residents seemed to be interacting with each other to some extent.

My biggest fear is that wherever Dad ends up, be it public or private, that will he just end up being in his bed all day, not wanting to get up & just feeling miserable because he is so out of his comfort zone? And is there anything we can do about that if that is the road he goes down? He is constantly full of praise for the staff in the public stroke unit hospital where he is at the moment, thinks the nurses are fantastic, they give him so much attention & would do anything for him........I'm just wondering if you go from that to a NH with just 1 nurse & 1 care attendant at night time then he is really going to miss the interaction he currently has with the nurses. And would there be more nurses in a public home? At least there would be probably more continuity in a public home as the nurses are being paid directly by the HSE?

I am so stressed by this, and just do not know what to do for the best for my Dad.
 
hope this does not seem insensitive, but have you asked your father what he wants to do?My aunt developed alzimers [sorry about spelling]and we talked with her about what she wanted to do when she got bad.She appointed two people as power of attorney who have the sole authority over her medical care money etc.In my opinion this is the best thing to do as you cant please everyone in the family.I suggest you put it to the vote and let the family decide who would have your fathers best interests at heart.Good luck
 
Hello Marcellof, Just wondering as to how you are getting on.Did you manage to sort something out.
 
Hi all, Dad was moved to a private nursing home last week. It is less than 15 miles from 'home', and so far it seems that a lot of neighbours who had not been to see him in the stroke unit have popped in to visit in the nursing home.
He is settling in ok there I think, though I am not sure if he realises yet that he will be there for a while.

I've found he has become very quiet (with last 3 weeks or so, not just since move to NH), if I bring up a topic of conversation that he doesn't want to talk about then he just doesn't talk about it at all.
The staff in the NH seem nice, but I do feel that there just isn't enough of them to pay the extra attention, such as making sure he eats all his lunch, giving him help if he needs it at mealtimes etc.

I keep hearing ads on the radio about comfort keepers, and how they can provide around the clock professional care - I am assuming that the costs would be extremely high? And to be honest I dont know if he would actually be any happier at home at this stage.
He was put on anti depressants a few weeks back, and I'm just wondering if there is anything else I could do to try & lift his mood a bit? I fear I am becoming quite depressed myself over the whole situation, can't seem to find a way to accept what has happened and say goodbye to Dad's old life & come to terms with how invalided/helpless he has become :(

Thanks for all the support here, sometimes it just helps to let it all out, even if no one can 'fix' it.
 
Hope this helps

Hi, Your Dad’s illness is a major life changing event both for your dad and the family. My first thoughts would be that its going to take alot of time and patience for your dad to come to terms with the stroke and how its affected him and also to adjust to the nursing home. I don’t know the extent of the effects that the stroke has had on your dad – but it is pretty common for persons who have had stroke’s and many other illnesses to experience bereavement like symptoms and those symptoms can be inter-changing where people experience denial, anger depression (in no common order) to the later stages of adjustment and acceptance.

On the psychological front, it can basically be a period of trial and error with anti-depressants until the doctors find the right one and balance. I am not going to give medical advice but if you do feel that your dad is withdrawing – it may be worthwhile for you or your family to bring those concerns to the attention of the nursing home staff and also the consultant and/or doctor that he is attending. It may be that he may need a review of medications. If its needed, he may also benefit from counselling with a trained psychologist or counsellor.

I think it’s very important that you are very honest with your dad about the possibilities of returning home. If your dad has the mental awareness and capacity, it is important that your family involves your dad in any decisions that do affect his life. In rehabilitation speak it is important to focus on your dad’s abilities rather than on his disabilities.

Have you talked to his clinical team within the hospital about the feasibility of him returning home in the long-term – his prognosis for recovery and the reality of him regaining any loss that he has suffered in physical or mental function? Usually when a plan is in train to return a person into their home, a discharge plan is put in place within the hospital itself and this would normally involve physiotherapists, occupational therapists, social workers and clinicians. They would assess all your dad’s needs on returning home and part of this usually involves a home assessment and visit that will look and help to identify his specific needs and the systems that will need to be put in place for returning home. It is not advisable that a person be discharged without this home assessment being first conducted and the community support systems that were identified being already in place within the home.

On saying that, it is important to be also completely honest with your dad, don’t give him false hope about the real prospects of him returning home. While it may be hard for him to accept at the initial stages (and some never accept it), and for you's as a family to see him going through it, being completely honest with him may help him through the period of re-adjustment.

I don’t know what area you and your dad are living in – but there are also voluntary supports and groups that you and your family may also like to access that may be of some help. You may like to ring the Irish Heart Foundation as they have a dedicated advisory service including resource materials on the various issues around stroke.

They also have a nationwide network of support groups for stroke victims and their families that you may also like to consider linking in with. It can sometimes be helpful if you link in with other people with similar shared experiences. Sometimes talking to other people who have gone through similar experiences can be a learning exercise and a tremendous system of support.

W: http://www.stroke.ie/iopen24/stroke-support-t-483_512.html
National Stroke and Heart Helpline Locall 1890 432 787
Irish Heart Foundation, 4 Clyde Road, Ballsbridge, D4. Tel. 01-6685001.
[email protected]

There are other support groups
Carers Association
Tel: 057-9322920
www.carersireland.com
E: [email protected]

Crosscare Carer Support Programme
www.crosscare.ie/index.php?/what_we_do/community_services/carers_support
Crosscare Support Group, The Red House, Clonliffe Road, Dublin 3.
 
Thanks, I will look up the support groups. My Dad is based in the South of the country and I'm living in the West, but I imagine one can join a support group wherever they are?

Living at home, even in the future, does not seem to be an option for Dad I dont believe. The stroke unit team never mentioned it, said that because his level of care was so high that a nursing home would be the best thing for him.

I must look in to seeing whether he would talk with/to a counsellor or not. Once again though, its not something I feel he would answer me on. His 'calendar' seems to be all mixed up, days/months/years, I guess that's maybe to be expected when he is lying in a bed most of the day.

While Dad does have mental capacity, and his speech is fine, I would be concerned about his ability to make decisions and/or to grasp the reality of the situation. For example, when we asked him if it would be ok with him if we use some of his money to pay for the nursing home, he didn't really give an answer only said something about VHI paying for it. Which makes me wonder whether he thinks he is only there for 2 weeks recuperation.
Obviously none of us want to ever say to him that he is in the NH forever more, have to give him some hope & try and stay positive but on the other hand there's no point in me saying to him that he'll be home before he knows it as realistically that would just give him false hope. He doesn't really ask about home and so far has not asked us to take him out of the nursing home, but it is difficult to get a straight answer about anything from him.
He seems to forget that people have jobs etc. to keep going, and it doesn't sink in if someone says they are going back to Dublin for the week & won't see him until the following weekend. He could still turn around on a Tuesday and say 'I thought X might be in to visit'. Maybe just all days blend in to one if you dont have anything specific to mark out the different days.

Anyway, for now I will look in to the support groups, both for Dad and for the family.

Thanks again, everyone has been very kind.
 
marcellaf said:
He could still turn around on a Tuesday and say 'I thought X might be in to visit'. Maybe just all days blend in to one if you dont have anything specific to mark out the different days.
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This was a very common symptom that my mother had following a stroke, she would nod and agree with you quite reasonably when you told her you wouldnt be in til next Thursday and a short time later would say 'see you tomorrow then' - she wasnt retaining any short term information at all for a while. It did pass to some degree.

There were a number of other mental issues that were only really visible to someone who knew her, she became more 'child like', unaware of the consequences of her actions, she also went through a period where she used a lot of swear words and said a lot of hurtful things (for example she would see you and say 'god you look like a fat cow in that') - and she was genuinely distressed when told she was upsetting people - it was as though her self control mechanism was broken - that also improved with time.

She became quite depressed in hospital and believed when she was home in her own house she would 'get better'. She then came home and became very depressed when the realisation set in that she was not getting better (she was always slowly improving but she had expected a return to normality that never happened).

It takes a long time for someone to come to terms with having a stroke and their minds can play tricks on them for a long time.

A support group would be wonderful, both for your Dad and for family members.

Try not to beat yourself up too much about whats best and whether or not your Dad is truly happy - its also important to remember that he needs to be looked after now and that a nursing home is best placed to do that rather than him home alone. You are doing the best for him. What you want (and no doubt what he wants) is for things to be back as they were, but as that cant happen you must make the best decisions you can and not beat yourself over the unsavoury aspects of those decisions.

Its very difficult for all but in terms of the stroke itself - improvements continue to come, for 3 or 4 years after the stroke itself. My mother continued to improve both mentally and physically until her death a number of years later (which was not stroke related).
 
Thanks truthseeker, it does help to know that some form of improvement can be hoped for.

Yes, its exactly as you say - at times, its as if Dad has no control over his mind or what he says, but I suppose at least other times he can be very clued in to things like matches on tv etc. (knowing the scores, how many points in 4 goals etc.). His vision is effected on his left hand side, which unfortunately makes it difficult for him to read (something he loved doing). As we read from left to right, he can miss words on the left which makes it frustrating for him as he doesn't realise that he is missing the words, he just thinks his brain isn't recognising what he is reading.
Similar with television, I think while he can see most of the screen, his concentration goes v easily, which I guess it to be expected when you get a big bang to the brain like he has.

As for not feeling guilty or bad over the decision made, that's one of the hardest things for me. I am always wondering if we have done the right thing, whether or not we should investigate more in to bringing him home etc. etc. I feel as if I've let him down and that's a horrible feeling. But we did it based on medical advice, and of course I do want him to be in a safe environment with trained people looking after him - I suppose I just feel like I want him to understand that we did this for his own good, not just because we don't care. Not sure if that makes sense written down :confused:

I'm waiting to hear back from one of the support groups, hopefully they will be of some help.

Thanks again to everyone here who has taken the time to reply, every bit of advice/hope/support is really helpful.
 
marcellaf said:
His vision is effected on his left hand side, which unfortunately makes it difficult for him to read (something he loved doing). As we read from left to right, he can miss words on the left which makes it frustrating for him as he doesn't realise that he is missing the words, he just thinks his brain isn't recognising what he is reading.
Similar with television, I think while he can see most of the screen, his concentration goes v easily, which I guess it to be expected when you get a big bang to the brain like he has.
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My mother had exactly the same problem with the left side perception, it wasnt that she 'couldnt' see on the left, her brain would just ignore the stuff her eyes could see on the left. That went away after some time, she was able to read and see things on the left. We tried to encourage it by putting things to her left, for example if she asked for the tv remote we would put it down on her left and tell her it was there. She slowly began to 'look' to the left as well as the right.

Her concentration was very bad as well, and that also improved. She slept a LOT for the first few months also, the docs said it was basically the trauma continuing to heal.

What we found helped improvement more than anything was to be pushing her to do things. She would say she was too tired, didnt want to bother doing her physio - or if you were helping her dress she would passively allow you. But we had to kind of force her to do things, she would get very angry and say 'you just do it' but if pushed she would start doing things for herself. The single biggest improvement I ever saw in her was when she went to a respite place and they didnt realise she needed assistance going from her wheelchair to her bed, or to a chair, so they left her to it. Left to it she HAD to do it herself - so she did. She came back after that weekend suddenly more independant.

So just be aware that there are times where it feels like tough love - but doing as much as you can for the person (I mean physically) doesnt always help.
 
wow, that is amazing that the vision on the left side came back with your mother - do you remember the time frame it took for that? And what about for the tiredness? Dad seems constantly fatigued, and I am wondering whether that will ever improve.
I'm sure in the greater scheme of things, and barring nothing else happening, Dad is probably still considered to be in the 'early days' of recovery. Just because it feels like a long time to us doesn't mean he 'should' be further along, so that in itself is good to know.

Some days I feel hopeful after being to visit him and other days I get frustrated by lack of progress or by his tiredness.

We certainly do encourage him to do the physio & I almost always let him feed himself rather than spoon feeding it to him - he can do it, even if it takes a bit longer than he would like but as you say, if we do everything for him then it will be harder again if he has to do it for himself.
 
Well everyone is different in terms of recovery rates, my mum was much younger than your father but had a much more severe stroke (in terms of her abilities immediately afterwards) - she was unconsious for almost 2 weeks, and in hospital for 4 months. Initially she had some speech difficulties, her swallow was gone, she completely lost the use of her left side, including perception/vision. By the time she came home from the hospital she had fully regained speech, her swallow was vastly improved (she could eat solids but just had to eat slowly), her perception on the left was still bad, and she had no use physically of her left side.

In the next 6 months she regained some left side usage - was able to walk a little with a tripod walker, was able to partially dress herself (couldnt do shoes and socks) and the perception problems started to improve also. She still needed help to get on and off the loo and to move from wheelchair to bed or couch.

In another year she was able to move much more freely with the tripod (it was a huge effort at first), was able to put on shoes and socks, could go to the loo by herself, could move from her wheelchair to bed or couch etc...

The tiredness lasted 6-8 months I think, and the concentration just slowly improved all the time.

3 years after the stroke she was quite independant within her own house, was able to prepare simple meals - but still needed the wheelchair to get about.

Mentally she was much more 'herself' after around a year, and that also continued to improve.

She passed away in an accident (not stroke related) 4 years after she had had it, but actually was continuing to improve slowly right up to that point.

The first 2 years saw the most noticable improvements.

Its very slow, but improvements definitely come.
 
Truthseeker, I want to say how very sorry I am that your mother passed away after an accident, how sad after she (and you) had already been through so much.
I have to try & be more patient with progress, and not get as frustrated as I am (never in front of Dad, I always tell him he is doing great).
Tough day yesterday, we had taken him out out the nursing home (in wheelchair) for 2 hours on Saturday and then yesterday he seemed to think that I was 'signing him out' of the nursing home for good and taking him home :( I explained that no, not today but that we could see about taking him out again next weekend for a few hours & then come back in to sleep.....but it must not have sunk in with him as he rang a few hours later to know where was I and when was I coming to collect him. Heart breaking, as I felt he understood when I said about short visits out from the nursing home but he must not have.
I think its time that the family met with his new doctor & had a chat with him about our concerns - perhaps it could even be the medication that is making him confused, hard to know.
I felt so bad yesterday when he rang, it was like I had abandoned him :(
Finding it very hard to 'switch off' and think of anything else, but I know that worrying myself sick isn't going to change anything unfortunately.
Thanks again for support, take care.
 
Hi Marcellaf, I think it would be a great idea for the family to meet with the doctor, you should make a list of your questions and ask the doctor. Some of the confusion may well be from the medication, some of it may be from the brain injury (stroke) itself. A useful thing to ask the doctor is how much or little should you tell your father, especially while he is not really taking things in too well.

Its very important that you look after you and make sure you are getting enough sleep, food etc.. And try to remember that you are dealing with someone who has a brain injury thats in the early stages of healing, you father will definitely forget things, think things that are not to be etc... and you are not to be feeling bad about that, its not that you are not being clear with him, but he will get ideas into his head that he is going home or being collected that are not true and your best bet is just to be gentle but firm with him. And not to feel bad about that. Just bear in mind you are doing your best.

On a light note, my mum was convinced that a parrot sat on the end of her hospital bed at night and that sometimes a dog came in to her from outside as well (this was early stages of recovery). I used to just agree with her and let her talk about the dog and the parrot. So did the nurses etc... Some months later, she hadnt mentioned the dog or parrot for a while, and she said to me 'you know, I used to think there was a dog that came in at night and a parrot that sat on the end of the bed too'. I said 'yes I know, you told me'. And she said 'I know I told you - and you agreed with me - so you must have been going a bit loopy too' :)

The brain is a curious thing - my mum also went through a phase of thinking people were stealing her stuff - as in she would talk to a visitor and after they left would say 'she was wearing my shoes, I know I bought those shoes last year - she stole them!'.

But ALL of that passed with time.
 
We are hoping to set up a rota system for visiting Dad - just wonder does anyone have any tips or hints or other things to take in to consideration when doing this? Is it too soon to be cutting back on visits already (3 months on)? Could it impede his progress/make him think we have 'abandoned' him?
As it is, between family, friends, neighbours Dad is getting approx 6 visitors each day. This will no doubt slacken off after another while as people get used to him being in there. At the moment, he does not seem to talk much/at all to the other residents in there. Would that be usual do you think? Obviously it would be good for us to know if he had one or two friends in there who he could chat to if the day comes when there is no outside visitor.
His confusion makes it hard to know what way his condition is to be honest - it totally depends on what time of day/what day you visit. Some people find him great, very alert & clued in, whereas others have expressed concern over him seeming to be unaware of what has happened/what's going on in the real world. We just have to wait and see.
 
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