# How to cope when a parent suddenly becomes incapacitated?



## marcellaf (9 Aug 2010)

hi all, 

I'm not sure if this is the right place to post this or not, but figure that I may get some good ideas from others who may have dealt with similar situations over the years.

My 73 year old Dad has had a series of strokes over the past 4 weeks, and is currently in a hospital rehabilitation unit.  This came as a huge shock to us (his children) as prior to this he was extremely independent, driving every day, very fit, in to hill walking and swimming, socialised most nights, ate well, could text & use email etc.  

The prognosis is not at all good, the strokes were severe and the doctor has told us that Dad will not walk again (bar a miracle) and will need pretty much 24 hour care.  He can feed himself, and his speech is fine, no trouble there thankfully.  His mind is also 99% perfect, though he does not speak as much as he once would have.  Its not looking good for him to ever be able to get back to his own house which is heartbreaking, but with none of us living there then a nursing home would seem to be the main option.

There are a few reasons I am posting here.  The first is wondering how on earth do people cope with the stress that this creates?  And no, I'm not being cold hearted or anything, its just the initial shock & now the trying to fill out forms & figure out what to do for the best - well I'm finding it very difficult.
Also, my siblings are all falling out amongst ourselves which only adds to the strain but hard to prevent at the same time.
The house (home) is unoccupied at the moment with Dad being away, and while we are down for weekends etc., I am aware that word can spread v quickly about an unoccupied house so thinking of getting phonewatch installed - would that be a good idea?
On a practical front, what are the main things we need to think about when any of us are leaving the house knowing that no one else may be in for another 3 or 4 days?  Are things like dimmer lights, sensor lights etc. a good idea or just attracting more attention?

My main concern is for my Dad and I want to do everything I can for his well being.  I'm just worried that I'm feeling so stressed & worried & exhausted that I wont be much good to anyone unless I get a grip, and fast.
What has happened has happened, I can't change that, but I would like to be able to contribute meaningfully to making life some bit easier for Dad & for my siblings in this new situation.
Thanks in advance


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## Threadser (9 Aug 2010)

First of all my sympathies to you and your family for the situation you find yourselves in. It sounds as if a nursing home will be the only option for your Dad and I presume you have already got the forms for the Fair Deal Scheme. You will be obliged to pay 80% of your Dad's weekly income and 5% of the value of the family home for a period of three years to cover the cost of the nursing home. Had this happened to your Dad a couple of years ago, yourself and your siblings could have been liable for the full costs of nursing home care (circa 4,000 a month) so that might be some small consolation. My family home has been occupied for 18 months as my mother moved into residential care last year. It is important to inform the insurance company that the house is unoccupied but used by family members at weekends. Unfortunately this will mean a considerable increase in premuim, but not to do so, could mean that the house would be uninsured in the event of a claim. Hope your Dad manages to get back some quality of life and that yourself and your siblings can keep the peace during this very stressful time.


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## putsch (9 Aug 2010)

Sympathies - its a huge shock when a parent who has been running her/his own life suddenly needs help. It is very normal for this to produce lots of tensions amoung the siblings and there is no single way to avoid or deal with this - each family finds its own solutions. I've been through this with Mum and her dementia. 6 years later it has eased somewhat but its a constant underlying strain.

So I have no silver bullet except to say stick in there - try and take everyone's views on board and if possible find consensus solutions accepting that not everyone can or will contribute (financial or time) equally. Looking after or out for a parent has to be its own reward! I found that having one or two understanding siblings and friends helped me from thinking I was going crazy myself. You will find your own level and be aware of committing to too much - your Dad may be around for more than 20 years!

Good luck


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## TLC (9 Aug 2010)

Families falling out at this time is really quite normal - everyone's stress levels are at breaking point, so if at all possible try & get everyone round the table to talk.  Perhaps it would also be a good idea to talk to your dad as to what he thinks about the future plans - just because he isn't 100% at the moment he seems capable of making rational decisions & he could be very hurt if he feels he is being treated like a child.  If you are lucky enough to get in touch with a good social worker who can lay out some options that could also be helpful.  Best of luck & I know from experience how difficult & shocking these days are.


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## Concert (9 Aug 2010)

Fully understand what you are going through. My Mam is 91 and has always enjoyed brilliant health.  She fell a while ago and has tendonitis, going for treatment this week.  As an only child I'm up the walls with worry.  We wanted her to move in with us and build on a big extension but she refuses all our advice and we need to do work on our house which we have put off waiting for her decision.  She wont tell us what she wants and is very private so we are up against a brick wall.  She lives in a big house, no alarm r security and complains all the time, very difficult as I have no one to turn to.


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## browtal (9 Aug 2010)

Sorry to hear of your sad situation. Keep your calm it will level out. Try to talk to your Dad.  Is there any alternative for your Dad - as against going into a Nursing Home. Do any of the family want to have him live with them - that is a very difficult decision. 
If you talk with your local Co-ordinator of Services for the Older Person in your area, they are very experienced and could maybe talk with the whole family and help you reach an agreement. Alternatively they could suggest a suitable person to help you.
If there is no possibility of your Dad returning home consider renting the house to help with the security issue.  
The property will be considered as mentioned by another AAM member in the Fare Deal scheme. At the moment the lean is 5% of the value of the house for three years.
It is a very difficult sutuation, many families fall out at this time and never regain their relationship again. 
Best wishes Browtal


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## MandaC (9 Aug 2010)

Not much I can say to help, only that I have an uncle in the same position at the moment.  His brother (coming up to 65) is his carer, but cannot cope as my uncle has had a series of mini strokes.  He also tends to "act up" for his brother which does not help.  Hospital want him out and sent home to clear the bed, but family concerned for both and looking for options.

I dont think you are coming across cold hearted at all, quite the opposite,  I hope your Dad regains some of his independence.

Be sure that you are 100% happy with the nursing home,  perhaps be more mindful that your siblings are also feeling stressed, so tempers may be shorter and make allowances where you can.  Also, look after yourself, running yourself ragged will only make the situation worse.

Is there anyone who could "house sit" short term.....say, a younger member of the family looking for their independence that might mind the house short term until you know what is happening.

Wishing you good luck.


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## salaried (10 Aug 2010)

Hello Marcelalf,My sympathies to all of your family.My family were there and dealt with the situation in the worst way possible,I regret it now .My wife is now there with her mother.The only advice i can offer is for all of your family to sit down and agree that your father is the only person that matters here.Accept that you will not always see eye to eye regarding your fathers welfare,but if i learned anything it is that a strong family unit can cope a lot better than a divisive one.And your father will recognise this.You are all confronting the unknown regarding your father.From experience you and your siblings are going to make mistakes along the way,Accept that.As for paper work ,set aside maybe two hours a week and then walk away from it.As for stress talk to your siblings and allow them talk to you.If you need to get anything off you chest why not come back here. I commend the the previous posters for their concern for you ,your family and your father.Hope to hear from you soon,regards Salaried.


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## ophelia (10 Aug 2010)

Usually the hospital will call a family meeting, where you can all sit around a table with the consultant. OT, Physio, Nurse etc. They will outline what your Dad's situation is. Obviously he cannot stay in hospital forever and some kind of step down will be necessary. Try to find out how he feels about going into full time care, ie. Nursing home or similar. Whatever happens, don't be pushed by the hospital into taking your Dad home until you find the best place for him.
By all means get some timers on table lamps in your Dads home. Preferably ask a neighbour/s to keep an eye out and make sure one of them has a key.


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## marcellaf (10 Aug 2010)

First and foremost I want to thank you all very much for taking the time to reply - I know it probably shouldn't, but it actually does help to know that other families have gotten through similar or worse situations, so thanks.

We are to have a family meeting this week, I will attend and probably 1 other sibling.  The others cannot/will not make it.

As far as I know, there is no option of him moving in with any of the family - it has not been mentioned.  Home help would not be enough in this situation, and because he lives in a rural area then I dont imagine that a live in home carer would really be suitable either.  I'm guessing that the family meeting will maybe help us more with these decisions, though from speaking to both the occupational therapist and the nurses, it would seem as if they certainly think a nursing home is really the only option.

Being honest, I dread the thoughts of having any conversation about nursing home etc. with my Dad, as I feel myself that he just doesn't want to know and is probably still thinking that he is going home.  The OT thinks that Dad may be further down this line of thinking than we realise though, and that it may not be as bad as I fear.  The guilt is enormous, and I fear that my father may get very angry & depressed if he thinks he will never again get home.  But being realistic, even if one of us was to give up our jobs/lives and move home, then I dont physically think we would be able to care for him on our own.  
Its just such a shock to see him stipped of his abilities and dignity, I feel as if my heart is breaking.

As for the family rows, well it seems you're damned if you do and damned if you don't - if you do a lot then the other siblings feel as if you are trying to take control and if you dont do a lot then you are not pulling your weight.  I know we are all adults and just need to be aware that this is a time of high stress for us all & to try not to fly off the handle.

Good to know re having to inform the house insurance brokers about the house being unoccupied, I would not have thought of that.  Neighbours and my uncle are keeping a good eye on the place also.

We do have one nursing home in mind, which is close enough to home (so his friends and family could visit) and seems to have a good reputation.  I guess I'm just in denial about what has happened some of the time, cannot believe how much of a change this is for my father and for us all - he has always been the backbone of the family & held us all together when my mother passed away suddenly a few years ago.  It really does just seem cruel 

Thanks again for the support & concern, I know we will get through this and please God he can get back some of his independence over the next few months.


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## dusmythb (10 Aug 2010)

Marcellaf, so sorry to hear about your situation. For this to happen to a loved one is so distressing. 
What i can say is that as your dad has not lost his speech and the fact he can still feed himself is a huge positive and should give you all cause for optimisim. With intensive rehab your dad has every chance of getting himself mobile once again. 
If you find that a nursing home is the only short term solution dont be too disheartened as he should have every chance of making a recovery and being able to return back to his home, albeit with some sort of home help if necessary.

The best of luck.


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## marcellaf (10 Aug 2010)

Unfortunately he is not able for intense physio/rehab, his body got such a blow that they dont want to push him too hard in case it causes another stroke  
So hard and all as it is, I am starting to slowly come to terms with the idea that he will not walk again.  In fact, I just got a call from the OT to discuss what type of wheelchair we need to get for him.  For a man that was really so fit and active, I can't imagine what he must be feeling.  

The nursing home we are looking at does offer therapies, so maybe if his strength or ability picks up then he will be able to participate after he gets to the home.

As I have learned, every stroke patient is different with some terrific success stories and some not so good.  I am being realistic and not pessimistic when I say that my Dad's ability to recover from this is not looking promising right now, and it is almost 6 weeks ago.

Tough times ahead, just have to keep hoping that we can think of ways of allowing him some independence, control & dignity in his day to day life.


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## browtal (10 Aug 2010)

Hello, You are doing great and discussing your situation which is of huge benefit. 
I work in this area and all the people I meet who go into Nursing Homes look forward to the day they will come home. Dont take this hope away from him. Give him the feeling that this is short term and maybe it is. It is never easy for the Older person - what is waiting for them.
Remember that you can and should take him out on Sundays and anytime it suits a member of the family. He will settle much better if he is still part of a family. 
If at the moment he is not well enough to take out, spend time with him and bring in grandchildren - particularly if he likes children - and their toys. Old people wonder at the toys available today. If you dont live near enough to take him to your home take him to a hotel. Great that you are looking at a NH near his home for his friends to visit.
Perhaps the best the family can do is make a rota to visit and take him out.
Older People can surprise you with the recovery they can make - dont underestimate his strong will - if he is still interested in life. Even if the house has to be sold he need not know.
Make sure to let the Nursing Home know that you are very particular about how your Father is treated. Dont be afraid to make little requests known to the Matron, his likes and dislikes, regarding food etc. They pay more attention to the patient whose relatives visit regularly.
Good luck and I know your heart is broken I hope the family will co-operate for everybodys sake. Do accept that your situation is the norm.
Best wishes Browtal


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## marcellaf (17 Aug 2010)

Hi folks, 

Just wanted to give an update & also look for more advice please.

The good news is that despite the doctors & physio thinking there was no way Dad would ever manage to walk again - well he managed to take some steps last week and on Friday walked approx 10 steps with just a walking stick and the physio gently guiding him.  We are thrilled and so is he of course, said it makes a difference in his mind too if he thinks he can do it. 
Now on saying that, its quite limited & he gets ever so tired after it but still, progress.

We had a meeting amongst the family to try & go through the fair deal scheme.  Its all quite confusing to be honest.  One of the questions that came up is, do the HSE have a limit as to how much they will contribute towards the care?  I'm talking about after the 80% of pension plus 5% of assets?  If for example we picked a nursing home that was on the higher end of the scale fees wise, could/would the HSE say why not put him in to Y nursing home down the road which is 200 a week cheaper?

I've contacted the house insurers & advised them that the house is mainly unoccupied, paid the premium for that yesterday.

We are considering installing Eircom phonewatch at sometime in the future - would anyone here recommend that, or are there other options?

It would look likely that Dad will go to a nursing home in the next 2 weeks, but I feel a bit more hopeful now that he may be able to be taken out in the wheelchair for short outings or journeys.  He is on a special bed/mattress at the moment, and as he won't be residing at home then we will not get any contribution if we feel in a few months that he might be well enough to spend the night at home (he would need the special bed).  Anyone any thoughts on how we could go about affording it?  I'm trying not to get ahead of myself as it could be a long way off (if ever) before he'd be able for a visit like that.
Last question for now, if we do eventually get to the stage where he may be allowed home overnight, what sort of nursing care/home help might be available?  And is there ever a chance that we could get some type of nursing care in the home over periods like Christmas or the weekends?

Many thanks again for all your help, please God things can continue to improve, however slowly.

Thanks


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## twofor1 (17 Aug 2010)

The HSE will do a financial assesment to work out your Dads weekly contribution under Fair Deal, this will not change regardless of which nursing home he chooses, the home must be on their approved list. It means the HSE contribution can be much more for one home than another but it is your choice.

To qualify for Fair Deal your Dad would have to be assessed as needing long term nursing home care.

There are several home care services for those assessed as being able to live at home with support.

I would not think you could avail of Fair Deal and somewhere down the road also avail of the home care packages to enable your Dad to stay at home occasionally, I would imagine it’s one or the other.

Your local public health nurse or the social worker in your Dads hospital would be the best person to discuss all the options with.


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## Skyrocket (18 Aug 2010)

Regarding home care at weekends and Christmas etc...
The HSE generally don't cover weekends, but they can allocate you a certain amound of time, say 2 hours per day, that you can use to get someone in from a private home care company.
There are forms to be filled out every month for that and you pay the private company person, but you are reimbursed the money by the HSE.
To set this up, you need to talk to your local public health nurse, who will help you liaise with the HSE home help person in your area, who will in turn let you know how to set this up with a private home help company in your area.
Regarding Christmas and Easter etc, I am afraid that almost no-one will come to the house at these times. Not when there are any family in existence. To my knowledge, the only people I have heard of who will have someone call in on public holidays etc are those who are utterly alone.
If you are not capable of looking after your Dad's intimate personal needs, you'd be better letting the nursing home get him up/put him to bed those days and instead bring him home for the hours in between.
Good luck. It might not seem it to you, because it has been such a shock, but it sounds like your Dad is doing well and at least has a chance of improvement. Believe me, there are families stuck in way way worse situations, cold comfort to you I know, but what I mean is, be glad he is able to do the things he is, and you will learn how to integrate it into your lives.


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## marcellaf (23 Aug 2010)

Thanks again everyone, just being able to ask questions and discuss matters here does help.

One item that cropped up over the weekend is that my aunts & uncles (Dad's family) think that it would be better to try & get him in to a state/public home rather than a private one. They seem to think that a public home would have better/more care as a private nursing home is obviously a business & needs to make a profit.

What do you think?  And if they are correct & the care is better in a public home, then how could/would we go about applying to get him in to one?


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## Guest110 (23 Aug 2010)

Hello marcellaf,


It does not matter if it is public or private - what is most important - 
1)Location of the nursing home to the distance the family have to travel
2)The care that the staff give to the patients
3)Friendlienss of the staff.
4)Quality of food.

If you see a nursing home - you just ask can you make an appointment and they will set one up.

From experience - every nursing home has it's faults. It is a place where alot of new staff come and go. Small issues - can be so fustrating. 

I would recommend that when you do visit nursing homes ask yourself the following questions 

a)Are the patients clean ?
b)Do they look happy ?
c)Are they sitting in a room on their own with no interaction ?
d)Do they take them out ?
e)How often do they get showered ?
f)What is the visiting times and are they strict about it ?
g)What is the carer to patient ratio ?
h)Will he have to share a room?
i)What type of people will he be sitting with at meal times ? 


If your father will be sitting in a wheel chair all day - he is going to need his family to give him constant exercise. The nursing home - will not provide this service as they are not being paid to do it but they will offer a physio theraphist for 30 minutes  or more for about 40 euro a half hour session.


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## Silvergirl (23 Aug 2010)

Just another suggestion, my mother was a registered carer / home help for years, she is now a member of the local active retirement club. She and her friends have found this invaluable as regards to information on entitlements and benefits for the elderly and incapicated. I know on occasion she has also had equipment on loan from them. My wheelchair bound aunt visited us from the UK and she was allowed to borrow a commode and a mobile hoist for over the bed for a few days, maybe you could rent/borrow the necessary equipment to enable you to take him home for visits?

It might be worth talking to someone in your father's area, they usually have the time and are delighted to help out. Maybe your Dad has contacts there that could ask on his behalf. Entitlements are changing every year so you never know. HTH and best of luck sound like you are making great headway.


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## csirl (23 Aug 2010)

My sympathies. Difficult situation. My grandmother had a series of small strokes in her old age and was hospitalised a couple of times. Was a very independent woman beforehand and had difficulty in accepting her situation. The reality is that if not now, at some stage in the future, you may have to consider selling the house. A house with nobody living in it can deteriorate very quickly, particularly one previously occupied by an elderly person who may not have updated/renovated in a long time. 

This is what happened with my grandmother - while she was well enough to come home from hospital, she was no longer capable of fully caring for her self. Unfortunately there is not much help available in this country for these circumstances. My mother and my aunt ended up caring for her - she spent half the time with each until she passed away a number of years later.

On a practical level, you need to get some things sorted out. My grandmothers solicitor set up an arrangement whereby her money (i.e. the proceeds of the sale of her house) was kept in trust. Her pension was also paid directly into this. Money could only be taken out for her medical costs, day to day expenses and bills etc. and only with both my mother and aunts consent - neither of them had sole access to the funds. This ensured that nobody could take financial advantage of her, but ensured that funding was always available to pay for her care. It worked very well.


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## annet (23 Aug 2010)

*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?


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## Complainer (23 Aug 2010)

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?


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## ophelia (23 Aug 2010)

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.


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## marcellaf (24 Aug 2010)

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.


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## asdfg (6 Sep 2010)

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


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## salaried (8 Sep 2010)

Hello Marcellof, Just wondering as to how you are getting on.Did you manage to sort something out.


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## marcellaf (8 Sep 2010)

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.


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## annet (8 Sep 2010)

*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.
advocacy@irishheart.ie

There are other support groups
Carers Association
Tel: 057-9322920 
www.carersireland.com
E: info@carersireland.com

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.


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## marcellaf (8 Sep 2010)

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.


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## truthseeker (8 Sep 2010)

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.


 
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).


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## marcellaf (9 Sep 2010)

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 

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.


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## truthseeker (9 Sep 2010)

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.


 
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.


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## marcellaf (9 Sep 2010)

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.


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## truthseeker (9 Sep 2010)

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.


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## marcellaf (13 Sep 2010)

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.


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## truthseeker (13 Sep 2010)

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.


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## marcellaf (20 Sep 2010)

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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