How to cope when a parent suddenly becomes incapacitated?

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marcellaf

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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
 
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.
 
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
 
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.
 
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.
 
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
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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
 
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
 
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.
 
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.
 
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?
 
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.
 
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.
 
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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