Dad had to go to nursing home - how to cope?

LegacyUser

hi all,

My Dad had a stroke in July, and as he was living in a rural area on his own up to that, it was not an option for him to go back to that life.
The consultants said it was a severe stroke (it was a series of strokes actually) and that really, with none of his 'children' living at home, then a nursing home would be the best option.

He has now been in the nursing home with about 7 weeks, and while it seems to be a fairly well run place, I am really strickened with guilt over the whole thing.

Dad has gone from a very social, healthy, independent man to a person who looks like my Dad but his personality is quite different. His speech is v good, but physically he needs a lot of help and is in a wheelchair most of the time. He can walk a little with help, two people needed.

I guess I'm hoping that someone on here could maybe advise how on earth people cope with such things? I'm devastated for my Dad, he had a very active life up to now and we really could never have foreseen anything like this ever happening to him. My Mum died suddenly a few years ago and now with Dad no longer being at home in his own house it is all just so strange.

I live about 3 hours drive away, so lately my siblings and I have done up a rota system for visiting at weekends. Dad gets a good share of visitors and his brother & sister live near the nursing home and call in to him often.

I'm already seriously dreading Christmas as I dont know whether we could/should take Dad out for a few hours or if this might only confuse him or disrupt his routine. He never talks about what has happened to him, and only very ocasionally asks anything at all about his home.

I feel as if my life is on hold, that I can't plan anything as I dont know how things are going to be in a month's time or 6 months time. I feel as if I'm slowly cracking up, and that people around me have no idea as they probably think 'sure its been more than 3 months, surely she is used to it by now?'

But how on earth do you get used to a totally different Dad, one who is invalided?

My doctor does not want to put me on anti depressants, wants me to talk to a counsellor & see if that would help. I dont know what to do for the best, and my own health is suffering as a result as I'm constantly guilty, can't sleep, stomach churning etc.
Help!

Ickle Magoo

Hey OP, we also have a long term illness forum, you may find some relevant threads on advice there too...

Long Term Illness

seamus

I guess I can only partially relate. My father had open heart surgery late last year and while he had been getting weaker and more obviously "old" leading up to it, he was still the same big man, full of vitality that he had been all my life.

The first few weeks after the surgery were a bit of a shock for all of us, because he was suddenly a very weak man, needing help to get around, go to the loo. The psychological after-effects of the surgery also last a couple of weeks afterwards such that he went from a very coherent, logical and no-nonsense man, to an often irrational, rambling men with a number of "senior moments".

Thankfully for us he's now back to full health and cogniscence, but I can somewhat relate to the feeling of helplessness that you're feeling. Your father is usually a rock in your life, strong and unwavering. When you see him struck down or incapacitated, you feel like you've lost one your main support structures in life - suddenly you have to cope with things on your own.

You say you're 3 hours away - is this the same for all of your siblings? You've probably considered this already, but what are the chances of transferring him to a nursing home closer to all of his family, or even moving him into one of your homes?

I think what's probably most beneficial for your father at this point is to not treat him like his senile or old, but simply as though he's disabled. I can imagine that the worst part of being moved into a nursing home is that suddenly every starts talking about you instead of to you, so if you continue to treat him like your Dad except just physically disabled, you will probably find that he is still your same old Dad and that will make it easier to cope. Being open and honest with him about your fears will also help as he may let you know that he's doing fine and not to worry. What probably worries you most at present is that you think he's lonely or frustrated or unhappy.

Unfortunately growing old is a part of life for all of us. You will get through it.

LegacyUser

Hi Seamus, you've hit the nail on the head exactly - I feel helpless. And if I'm honest, very angry as Dad had lead a healthy life, didn't drink/smoke, ate well and exercised a lot. Guess life just isn't fair

1 of my siblings is living close to home, and visits Dad 3 times a week. Because he needs a lot of care, it is not an option to have him move in with that sibling. 3 other siblings are currently living away also, between 1.5 and 3 hours drive.

Due to being on antibiotics, Dad had become very confused about a month ago - but I think this has eased off a bit now thankfully.

This sounds so selfish and 'poor me', when I know I should be thinking more about Dad's welfare. But to be honest, I am going down to see him this weekend and am dreading it already. I feel as if I dont know what to say to him anymore, he seems to have withdrawn a lot and has little interests. His vision was effected by the strokes which means that reading (which he used to really enjoy) and watching tv are now only possible for very short periods of time. His concentration is also not great.

Deep down, I realise that the nursing home is the safest option for him, and probably a lot less lonely than he would be if he was at home with just one or two carers. But I just dont know how to cope with all these feelings I have - guilt, anger, frustation, dread.

Plus because everyone in the family is so upset about what has happened, tensions are running high & family fall outs or snide comments are becoming the order of the day. I feel my sibling who is at home must be fed up with those of us who are away and who are only doing every second or third weekend, but at the same time I went down every weekend for 12 weeks & that is just not sustainable long term.

Another thing is that I guess we (family) are very serious when we go to visit Dad, always asking how he is etc. so he gets no fun out of us in a way - and we are often on edge waiting for him to say something that is totally leftfield/incorrect which makes us uneasy as we dont know whether to correct him or agree with him etc.
He just doesn't seem to 'join' in on the conversation, which leaves me struggling to try & think/talk about things that he might have some bit of interest in.

Anyway, just have to get on with it I guess,

Thanks

Eoin

I know you said your dad doesn't talk much about it, but do you get the impression that he is accepting his new way of life and home to some degree? Once he does, then it will be a bit easier for you.

But how on earth do you get used to a totally different Dad, one who is invalided?

I won't lie, it's really not easy. But if he's still with it mentally and not too depressed, then it's a little better. On a practical level, see how many of his creature comforts you can put in his room in the home - even if it's just pictures and small things like that.

The staff in the home should be well used to questions like what to do for Christmas, so get their feeling on what the best thing to do is.

This sounds so selfish and 'poor me', when I know I should be thinking more about Dad's welfare. But to be honest, I am going down to see him this weekend and am dreading it already.

I can absolutely sympathise with this. It's really tough, and it becomes a chore when the person you're used to has completely changed. I would be absolutely shocked if this wasn't a very common reaction. It was certainly the case for my family.

astra2000

Hi op this is a difficult time for you and my heart goes out to you. It is going to take time for you and your family to come to terms with such a big change but you will eventually get used to the situation. When you visit your dad dont feel you have to talk and have conversation all the time just your company alone may be enough. I say this from the experience of spending a lot of time visiting my gran in hosp when she was very ill, we were there for hours on end and there were 5 other patients in the ward, a lot of them were not able for much chat but you could see the positive effect someone just sitting by their bed had on them compared to when there was no body there.
Maybe you could try reading a couple of articles from the local paper to him or if he was a mass goer get the parish bulletin on a sunday and let him know what is happening locally.
My advice would be stop struggling for things to say just be there and relax a little.

spudd

OP, i was exactly in your position this time last year. My father suffered two strokes after getting an aneurysm, and now needs 24 hour nursing care. After months in hospital he moved back to our home town to a nursing home, and it was a massive change for our whole family. Myself, my brother and sister are all based about 2 hours from home, so we alternated coming home during the week and at the weekends, to visit Dad and to make sure our Mom was doing ok. It's a massive shock to the system, and I would definitely recommend talking to your GP and a counseller about it. Even if you feel like you're coping, it can take only a minor issue in work or college that will break you, cos you've so much on your plate at home.

Christmas is a tough one...I was dreading it. We brought Dad home at the start of December for a couple of hours, to see how he'd react to being in the house again, so that it wouldn't be a huge ordeal on Christmas Day. Our problem is that Dad's speech is hugely affected, so we had to just try and read his body language and facial expressions to see how he felt about it. It was tough, but we all enjoyed having him around, and now he comes home most weekends for a few hours, to have dinner and meet friends etc.

It's a massive change for you and your family, but the best thing to do is just realise that life has changed completely, but it can still be good. Start rebuilding a family life, just a different one, that allows your father to have the best quality of life possible, with as much independence as you can. Make sure you take care of yourself first though, you'll be absolutely no support to him if you're not doing ok yourself.

Best of luck OP, we're a year on from where you are, and life is starting to feel normal again, so things will get better

LegacyUser

Thanks for all the replies, just to know that I'm not going absolutely crazy is a help.
Eoin, he is still fairly with it mentally (about 90%) with just a few lapses. His dates/times/calendar is all over the place but I guess that is to be expected when most days are the same in the nursing home. Personality wise he does seem very different though, simple things like asking after people etc. which he would always done, no longer happens. Hard to know if he has accepted his new life, he just never says anything about it.
He does receive physio where he is, there is a physiotherapist on staff Monday to Friday so if Dad is able for it then he has physio every day.

The odd thing is that I thought myself that his 'stance' & walk was so much better when he was in the stroke unit - while he was in there, he went from being told it would be a miracle if he ever again walked, to being able to walk almost unaided (with someone beside him 'just in case' but not really touching him) with a walking stick on his right (good) side. Whereas since he has gone in to the nursing home, any time I see him being taken to the toilet by the staff then it seems as if he is totally leaning over to the left (weak) side & just generally his posture isn't anything like as good as it was say 2 months ago. The physio in the nursing home has told my brother that she is happy with his progress, and that she feels there is some tiny bit of power still in the left arm. I haven't actually had the guts to say to her that I thought he was doing a lot better before now

astra2000, you are probably right - I probably make things more uneasy by sitting there waiting for something to go wrong...... I will try & relax tonight when I go there, and just see how it all goes. Dad does keep mentioning about going to get some shopping done (groceries), and we've tried all the dodges in the book at this stage and I think he is getting annoyed at us now as he probably thinks we are ignoring him. But it would take so much out of him to leave the home right now that I dont want to put that on him - plus the one time we did take him out to go to mass, he got 2 kidney infections just after and I'd be afraid he would get something else this time.
Spudd, hope you dont mind me asking a few questions. First of all, is your Dad mobile? Did you have to make any adaptions to the house for when he comes there at the weekends? Has he ever stayed overnight at home? At the moment my Dad needs help with all movement, plus full help going to the toilet. He is urine incontinent & wears the pads.
In his pre-stroke life, he would never, ever have wanted anyone to have to look after him and I feel his dignity has already slipped so much without him having to ask his son/daughter to help with personal functions.
He seems at times to be unaware of his limitations, which resulted in him taking a fall in the nursing home 2 weeks ago as he didn't realise that he couldn't walk over to the table. It is heartbreaking & distressing, and such a change.
I do have to try & look after myself - even though I am not his full time carer, I still reached burnout myself the week before last which resulted in me getting a respiratory tract infection and a kidney infection - my doc was not happy with me at all

Oh to think that life will ever feel normal again - that would give me hope as right now I feel as if I'm in total limbo.

spudd

no problem, ask away. it's nice to think i could help someone in a similar situation, we've gotten great support over the last 18 months. While i think of it, have a look at Acquired Brain Injury Ireland...they are an unbelievable group who have given us and Dad such support, we wouldn't be where we are without them.

Dad isn't mobile, the type of brain injury he has from the strokes means that his brain literally won't tell him to walk. He has full movement of his limbs, but is in a wheelchair. He unfortunately hasn't stayed overnight yet, but we're working on adapting the house and getting trained to care for him. He wears the pads, needs complete hygiene care. When he does come home, we have a ramp so he can get into different rooms, and we've been taught by an OT how to transfer him from the chair to either an armchair or into bed for a rest (he gets tired very easily). We're hoping to get a complete new bathroom and bedroom for him, with a hoist, bed, wet room etc.

Just remember it's early days for you yet, so start looking up online at the different supports that are available, both for your Dad and your family. Like I mentioned, ABI are amazing, as are the wheelchair association. Headway is another brain injury support group, and as far as I know they provide counselling and advice for family members affected by brain injury.

Hope some of this is of help!

Eoin

Personality wise he does seem very different though, simple things like asking after people etc. which he would always done, no longer happens.

We weren't in exactly the same situation as your family is, but we noticed a similar pattern - just a sort of disinterest in the outside world. It did get better, but as I said, there were some differences in the situations.

I'd rather not go into any more detail,<snip>.

LegacyUser

Hi again, well I'm back after the weekend visits and it was up and down. Unfortunately they found a clot on his leg last week so now he is on blood thinners for that which is a bit risky due to complications from previous strokes. Guess they have to do something, but it was just another huge reminder that we are still dealing with a very sick man

I did get more of a chance to ask him questions this time, I asked him did he hate it in the nursing home and he said no, it wasn't too bad but that he thought he'd only be in there for 3 or 4 weeks and its been longer than that now........so I said that it wouldn't make sense to move him out of there while he was still improving and making progress and that he would be better to stay there for as long as that was happening (I did say that could be months but that wasn't it great that there was improvement etc.?)........not sure if that was totally the right thing or not but felt I had to give him a steer as to the next few months.
I asked the nurse whether she thought it would be any advantage to try & get Dad to talk to a counsellor, she said worth a shot anyway so she is going to set that up. He may not understand who the person is or may not want to talk to them, but no harm in trying.

I must get in touch with ABI Ireland & get some advice from them maybe, I have heard good things about them but just haven't been able to find the motivation to contact them yet.
Its all very well people saying to look after oneself or else you'll be no good to anyone but it can be so hard to justify taking a break/taking an hour to myself - part of me feels like why should I be relaxing/having a nice time when Dad is in the situation he is in? Aaaaghh, emotions are crazy things!

Goldenlady

Just saw your thread now, I know 100% how you feel. My Mom had a series of strokes over 12 years ago, aged 49. She has been in a nursing home since. I was 19 at the time and the decision fell at the hands of me and my father as my brother was only 13 and my sister didn't live in Ireland.
Hardest thing ever we had to do and I had asked to bring her home and was willing to give up college and mind her at the time, but the doctors advised we would actually grow to resent her if we brought her home as she requires 24 hour care.
Mom is still in the nursing home and I visit every week night, but Im lucky that my Dad is around and he brings Mom out at week ends. Ye should check out all your options, as in you can get an adapted car which would mean you could go and drive around rather than sitting in the home.
There are also groups like Headway (Which we only discovered this year!) that offer services and could bring your father out and about and allow him to interact with people in the same situation as he is in.
My mom is starting this soon and is really looking forward to it. None of us live at home, but we just make and effort. A lot of the responsbility feel on me, for some reason, perhaps it was because Im closest to my mom and always have been.
But the best thing we did and still do is do not treat your parent any different, my Mom stutters sometimes due to her strokes and we laugh about it, its just the way we would have always been. She can't do anything except hold a baby cup to drink from, but she still loves her hair/makeup etc. Just try and make sure your Dad doesn't lose sight of who he is. Despite what my mom has been through she has an amazing outlook.
For you, I definitely recommend speaking with someone, I didn't and ended up with panic attacks which I believed stemmed from this. Your emotions will be all over the place, and believe me we had plenty of illnesses along the way, you just need to be a little selfish sometimes and make time for yourself. Listen to me, ive been doing this for 12 years.
FIngers crossed for you, all will work out.

LegacyUser

Thanks goldenlady. Gosh your Mom was young when she had the strokes wasn't she? It must have been a huge shock.
Did your mother ever ask you why you put her in to a nursing home, as in is she aware that she couldn't manage at home? My Dad doesn't seem to be aware of his disabilities at all really - even though he will say that his left arm is as good as useless etc. He still talks about going out for lunch & that he's going to drive such and such a place. Maybe it will just take time for it all to sink in, it can't be easy to go from being able to do things to not.

I have made the first step in contacting someone to help me try and come to terms with all of this, because like you I feel that I am getting sick myself and depressed. One of my sisters has been off work with a few weeks now as she is going through a major bout of depression (she has suffered from it on and off for years), and while I am worried about her, I am beginning to realise that everyone of my friends, colleagues etc. have warned me I need to look after ME for now.

One other question goldenlady - do you find that your whole life/thoughts are taken up by your visits & thinking/worrying about your mother, or have you found a way to 'switch' off? I'm just wondering if you go and visit her every night then it doesn't give you much time for anything else - but you clearly think it does both of ye good to see each other all the time, and I'm wondering if you think it helped her progress to have you around so much, especially in the beginning?

Goldenlady

Im glad you have approached someone about help and you must remember its not selfish to think about yourself at times, its more of a necessity.

Initially Mom would make statements if in bad form of how myself and my Dad put her in a home (Never seemed to blame my older sister or younger brother) but Id always talk her around to see that we had no option. I always tell her my dream is to win the lotto and build two big houses, one for her and dad and one for me and my partner and ill get her 24 hour nursing, this actually keeps her going.
To this day my mom thinks she will come home at some stage, and we don't correct her on this. She thinks she will walk again and this is what keeps her going, I know people might say she deserves to know the truth, but as you will know with your Dad, sitting on your own all day in a nursing home gives them so much time to think, I just want my Mom to keep on to her hope.

I bring my mom shopping every now and again, My dad has an adapted car so I can take her on my own, perhaps this could be an option for ye - my mom loves this and it makes her feel very independent.

Initially my life revolved around visiting my mom, I used to be up there for hours every night, broke up with BF's as I was never there etc. Don't get me wrong though, I still managed to have a life but I always felt guilty if I was out enjoying myself thinking about my mom. The irony of it all, is that my partner now lives about 100 miles away from me, so when I met him a couple of years back, I realised I had to spend my week ends up the country and I could no longer be with my mom all the time, I had to just take control and initially it was tough, but the week ends became a break for me, dont get me wrong i love spending time with my mom but it wasn't until i took these breaks I realised I needed to not feel so guilty about not being there. My sister still lives abroad and comes home once a year and my brothers lives in Dublin so comes home every 2 months or so, and Mom is always happy to see them but never complains. I suppose she has me and my dad. Thing is Im now moving to live with my partner, but luckily I can split my week in work between both counties, this is a massive step for me as I might only see Mom 1 or 2 days a week but I have to live my own life too and there is always the phone - I presume you can ring the nursing home and speak with your dad (One of the carers holds the phone to my mom's ear)

I often wondered if she was happy there, and never asked her, as I thought it was stupid question considering I knew she would prefer to be at home. But recently headway came to access her (In the last few weeks) and one of the questions was "are you happy in the home" and Mom said she is, and I actually got a little tug in my heart as I felt happy then

Sorry for the long winded response, I do feel at times that I got overwhelemd with guilt and didn't do things like travelling etc, but at other times I just think I can always say I did as much as I could for my mom. My sister has said to me that she has awful guilt for not being there but her life was abroad ever before mom got sick and I never once felt anger towards her for it. A lot of family members said she should come home and I just feel if she comes home, my mom isnt miraculously going to start walking again.

I feel so sorry for you, as I know what you are going through, but all I can say it just treat your dad like you always would have. My mom's left arm is completely dead, and her hand is turned in, and I joke with her that its her hiding place for her money. I think humour will help ye through a lot. And I suppose one other item is make sure its a good nursing home, my mom's place have karaoke, days out, bingo, art, exercise etc so she is kept busy and not just sitting watching telly all day.

Good luck
x

LegacyUser

We would be the same, we try to continue to give Dad hope and would never dream of saying that he won't ever again get home.

Everything is up in a heap again, Dad had to be sent to hospital last night, they found another clot on Friday I am raging as he was sent in from nursing home at around 5pm yesterday and he spent the whole night in A&E, still doesn't have a bed.
I resisted the urge to jump in the car & race down, just feel that I want to run away from it all and not have to deal with it.
I'm in work today & can't concentrate on anything, seriously wondering how life can ever be 'normal' again......

Walls

When Mum had her stroke, the prognosis was dreadful. Thankfully she recovered but the impact was huge. She's bedbound, can't really talk, can't really swallow, and is only occasionally aware of things. When she is aware she is, frankly, her sharp self, so much so you would worry how bored she must be. But these periods are rare, and getting rarer.

When you're dealing with your Dad, the sound of your voice is a comfort. He knows then he isn't alone, that someone he recognised is near him and that they are talking. Talk about anything. Talk about your week, your family, your work. Read to him. Read the newspaper to him. If he likes music play songs to him or sing to him.

Remember, your Dad had to do a lot of things for you when you were a child and this is now your payment back. I always remember that this time is finite as well, and there is going to be a time when I miss going down to see my Mum. I'm not going to get her back, not the old one. So I have to make do with what is open to me and be grateful for it.

I will say my husband has the patience of a cheerful saint as well, which helps!

Goldenlady

Oh god, its terrible. I remember my mom was transferred to Dublin for rehab in the middle of my final exams, it was last minute and we were given no notice, I had to leave my exam, and just got awarded on my work for the year. But for you, its not that easy to just be there all the time. Once there is a carer with your dad and you can get in touch by phone that is all you can do. A&E is terrible, I actually got a clot in my leg last year and ended up there on a trolley for 3 days, the clot then travelled to my lungs, but luckily I was in hospital at the time. My mom actually came to visit me which was ironic, but I understood if she couldnt come. Your dad is still the same person, and at times will like to feel a little independant. Get to the hospital when you can, Im not sure if your work will help you out by getting time off, I must say the company im with are always accomodating if I need to leave at a moments notice etc.
You definitely need to share this responsibility with someone else, Im just lucky I have my dad there, perhaps your sibling living close could go to see him and you get there when you can. Your emotions are high at the moment, and you really need to just relax a little and only do what you physically can, there is no point in your getting sick too, cause it can easily happen when stressed. Good luck x

Dude111

I am so sorry about your Dad.....

All you can do is continue to be there for him,SHOW HIM AS MUCH LOVE AS YOU CAN!!!!!!

You still love him,being your father and this shouldnt change things....

I hope your dad comes home to you SOON.. We all love our parents more than anything and cant fathom anything bad taking place....

Peace and love to you my friend,Good luck

LegacyUser

Of course I love my Dad, and would do absolutely anything for him - I swear, if I could swap places with him then I would as I know how much he has done for me over all the years.
I guess I'm trying to take on board what my counsellor said to me the other night - that even though I may be his 'pet', that I can't be there 100% of the time,that I have to allow others to step up & take on the responsibilities from time to time. I'm the youngest (not that that makes much odds) but so far the vast majority of decisions, time spent, money etc. have fallen to me & my brother as the others are either less fortunate or not as able to manage.
Thing is that the more I jump to it every time something goes wrong, the more people will allow me or expect me to - and then give me grief if something doesn't go to plan
Because I delayed a bit in responding today, one of my sisters is now going to the hospital to visit & try and get things sorted out - I do feel a bit guilty for not going but I will be down tomorrow or Friday and would still have been expected to go then regardless of whether I went today or not.
Sorry, I know I'm rambling a bit and it probably sounds to some of you as if I dont care about my Dad - that is really not true but I am fighting the urge to rush to his side because I am physically & emotionally exhausted and really dont feel as if I could take another journey......and everyone keeps telling me I need to look after myself.
No matter what happens, I think I will always feel guilty for not being there, thats the crux of it all
Thanks for listening/reading.

Eoin

We got similar advice. As hard as it is, you just have to do your best to try and switch off when you leave the home. You're not any good to you or your dad if you're a nervous wreck. I know that's easier said than done, but try and keep it in mind.

spudd

I'd agree with Eoin on that one, it's a horrible feeling but you need to switch off a bit when you leave. I found college was a great distraction when things went bad with Dad...I used to allow myself to be upset for half of the drive back to college from home, then just switch off until I was home again. It doesn't mean you're not thinking about him, or worrying, and I rang home every day to talk to Dad, but by separating the college me and the home me, I found I was able to function better, and managed to get my degree despite everything going on at home.

It was hard, I found it was like I was two people - the girl in college who studied, went out, pretended everything was fine....and then there was the girl who came home and spent hours reading the paper to Dad, singing with him (he can sing better than he speaks, it's mad!), helping him eat, just sitting with him. It's upsetting, and really, really tiring....but when I'm saying goodbye to him he'll give me a massive hug, or squeeze my hand and it makes it all worth it to see him happy!

Smilerterry

I'm so glad I found this thread. This was me last July (2009) OP. My dad had a massive stroke on 1st July followed by a smaller bleed the next day. After nearly three months in hospital and rehabilitation it was decided that there wasn't going to be much more that they could do for him.

He cant' talk fully, can't walk and has difficulty concentrating... His eye sight and hearing has been effected on the right side (where he also was paralysed). So he needs 24 hour care in a nursing home. All I wanted to do was bring him home. I thought everyone was giving up on him, including my family.

my family are based in the UK, so it's hard travelling back and forward to see him and my mum, and for the last year I have been going back every other weekend and for any holidays. When I am there I go to see him and spend hours sitting with him, telling him any news I have, talking about what's in the paper (he doesn't like being read to for some reason). Talking about what's on the telly. Playing catch with him (one good hand and a juggling ball). I take him to the park and the little cafe round the corner in his wheelchair and he just observes people.

We have no idea what he is thinking half the time as he can't talk properly (we get the odd word), so we have to guess from his expressions, but he laughs and he smiles - alot! An that is what makes everything worthwhile. I tell him I love him and he laughs at me as if I'm mad We share a lot of kisses and hugs too - i just always want to let him know how much I love him and how great he is still. He is different and it's changed our relationship, but there is still a glimmer of him there and I hold on to it.

I do feel guilty leaving him there and knowing I am getting on with my life over here. But I also know that it would kill him if he thought that he was holding me back in any way, the last thing he would want is for me stop living for him. I have my mum who visits him most days, she takes time off from visiting when either I visit or my brothers visit. so he see's someone most days.

I'd better stop now as I'm going on and on, but just so nice to write it all down and to hear from people in a similar situation.

LegacyUser

Hi everyone, its amazing how many people go through this type of situation - at the beginning, I felt like we were the only ones nearly (silly I know, but none of my friends have had anything similar happen to them).
The real reason i went to talk to a counsellor is that I finally realised that I really HAVE to find a way to try & switch off - I find it very very difficult to think of anything else and its driving me mad to be honest that I can't just tell my brain to shush for a few minutes.

Smilerterry, and anyone else - did ye notice big highs and lows with your loved one? I have to admit, other than very briefly about 3 weeks after the stroke where Dad was quite emotional all the time, he doesn't really seem to be either happy or sad - just sort of blank.
I do hug & kiss him (we wouldn't have been a great family for that, but since my Mam passed away I established a routine of it with Dad), and I'm sure that it does help his confidence a bit to hear us saying how well he is doing.

I know that he would not want me to put my life on hold, he used always compliment me on my independence & said years ago that there'd be no need to worry about me anyway, if I was able to go off to Australia on my own & survive it then I'd be alright So on that front, I know that he would not want me to give up my life & try to mind him. But all it takes is a relative to make a snide comment about the nursing home and I'm back to thinking that maybe I should try & be a carer for him.......maybe I should just tell them to clear off eh? That's probably what Dad would tell me to do if I mentioned it!

Tough times but good to be able to write it all down here & rant a little, thanks to everyone for taking the time to reply.

Smilerterry

Struggling wrote: »

Smilerterry, and anyone else - did ye notice big highs and lows with your loved one? I have to admit, other than very briefly about 3 weeks after the stroke where Dad was quite emotional all the time, he doesn't really seem to be either happy or sad - just sort of blank.
I .

I can't really say I've experienced this. Dad doesn't seem to understand his illness so much, as he still try's to get out of his chair or bed to go home or down the pub and we have to remind him that he can't walk. But I think he then forgets. So most of the time due to his poor memory I don't think he realises completly what situation he is in (secretly hoping that is the case too).

Most of the time now he is quite happy and interacts with us, but he used to get very, very tired before and would be much quieter and just fall asleep. So often felt like he was ina glum mood or nothing was going on. But I think that was when he was still quite ill and his body was still fighting to recover as much as possible.

LegacyUser

hi all, back again after a hectic few days. Dad was kept in hospital for a week, which has totally & utterly thrown him out of whack with reality. He thinks he has been to Dublin for an operation, more days he gives out that he was ready all day to go to Dublin for the operation but they never came to take him..... not sure if he knows he is back in the nursing home now or not (sometimes he does seem to and asks when are we taking him home), its all up in a heap.
Maybe you are right smilerterry, maybe its just that its still early on in the recovery because I too like you think that Dad has become very glum & quiet, and he just sits there. A lot of times lately he has had his head down on his hands, like he just doesn't want to sit upright & engage. Its bloody heart breaking to see him as such, and I find it very very hard not to break down in front of him (which I dont want to do).
As a result, I find I am cutting back on the length of time I spend with him - I used to spend up to 2.5 or 3 hours per visit with him, now I want to run screaming out of there after an hour, sometimes less.
What is wrong with me? I know he's still my Dad, but I feel so numb to it all over the last week - its as if my brain has given up on hope or something, I dont know.
When he went in to hosp with clot the docs in there told him he could have another stroke, and he told me this back several times so its obviously on his mind. He is also talking about cats & mice being around (there aren't) - how can I find out if he is in the early stages of dementia/alzheimers or if it really is the medication? I feel I'm losing my Dad, he is becoming more and more distant with no interest in the outside world.
I just dont know what to do at this stage - feel so bad that I dont want to go see him anymore as he is not the Dad I had 4 months ago, and I'm really angry about that.

Walls

You should contact here; http://www.alzheimer.ie/ Alzheimer Association of Ireland. Firstly, they will understand what it is like for you, they're going through it too. And secondly they can help with a diagnosis. Also, ring your GP immediately and ask for advice.

seamus

struggling wrote: »

When he went in to hosp with clot the docs in there told him he could have another stroke, and he told me this back several times so its obviously on his mind. He is also talking about cats & mice being around (there aren't) - how can I find out if he is in the early stages of dementia/alzheimers or if it really is the medication?

It could very easily be either tbh - if he was under strong anaesthetic and has been subsequently medicated with opiate-based painkillers or anything equally strong, then it might appear like he's losing his mind. My own Dad reported that when he was in the hospital he was seeing spiders and all sorts of creatures crawling on the floor and across the ceiling but kept his mouth shut because he thought they'd ship him off to Dundrum.

As Walls says, speak with his doctor for some advice on what's happening to him.

It's one of the saddest things that in the attempt to keep people alive we medicate them to the point that we lose the person that they were. I would be very seriously looking at that first before the possibility of dementia.

LegacyUser

I agree Seamus - if it is the medication, then it is removing the person he once was. Now I know the stroke will have changed some aspects of his personality anyway, but this is different - this is him saying things that do make him sound as if he's losing his mind. Plus at this stage, we dont actually know what to believe from him, which is a really bad situation to be in

The thoughts of this going on for years and years is distressing - its like an ongoing marathon that has no known finishing line. As I said earlier, I feel so ashamed & guilty that I find it such a chore to go & visit him, that is now how I want to remember my Dad. I just have yet to find a way of being able to cope with it a bit better, because right now I just dread it all and am frightened by what is happening.

Walls

My own experience was that a lot came back; Mum seemed gone for quite a bit, but after a few weeks of genuine rest, her personality seemed to come back and she was more lucid. We reasoned, as well, that with her being bed-bound she was resting more, was less tired and so was recovering more. So that might be the case as well.

In terms of you being distressed at the impact of all this, firstly, you need to talk to someone. Hopefully your family is able to be a comfort to each other, but that isn't always possible. That's another reason the Alzhemier's Association is such a help. My Father was able to speak to people who's spouses had been similarily affected, and to share the thoughts that would be too hard to say to others.

LegacyUser

Walls, do you remember at all how long it took your mother to 'come back'? Its been 4.5 months now, and its further away Dad seems to be going - he seemed better/more lucid 2 months after the stroke than he does now. I dont know whether it is because he is in a nursing home when he thought he would be going home that is causing this distance - maybe he is angry with us? Hard to know as I feel sometimes if you ask him any kind of complicated question (about feelings, emotions etc.) then he doesn't really understand what and why you are asking.

I am now going to counselling, which is good but very hard to accept the advice sometimes. For example, I felt after the last session that my counsellor was almost telling me to forget about my Dad, that I have to live my own life now - I'm sure she just means I need to be able to seperate out the two, and not let Dad's condition/mood be my condition/mood but that is easier said than done.
I feel so guilty if I'm planning a night out as the voice in my head says that why should I be having a good time when my Dad cannot?
Most of the time I think I'm just going a bit crazy, veering from emotion to emtion, fear to anxiety to guilt to anger to denial to ignoring the situation......

Walls

Your pain, and your guilt aid and assist your father not a jot. You can sit in ashcloth and cover your head, and all you are doing is giving in to feelings of sadness. Yes, you feel down, and it is going to be the case that you have bad days. (Mine are Mondays, when I come back up; the jolt is terrible). Even if you gave in completely to the situation, if you sank under the wave of sadness, you would in fact be making the situation worse. It would mean one less person to help your Dad and one more person for your family to take care of.

My sister is a nurse, she's trained to take care of what is the problem rather than having her emotions lead her. When Mum got sick she was sorting out assistance, bed care, medication and medical cards. We were following her lead, letting her say what would be good and what wouldn't. It is assistance like that that is necessary; think of it as being a helpful person in an emergency (say like a car crash); if I sit there screaming I'm just one more problem. I need to help people to be of use.

Nevyn

It took my dad nearly two years to come back from his strokes. He'd one big one and then two small ones, he was lost to us and when he did come back for brief lucid periods he was soo angry at being trapped in his own body.

He was in hospital for a little over 6 monhts, and then down at the stroke unit as a day patient for OT for another 6 months. It aged him terribly but, he fought back and having family around him and talking to him pushed him to talk and to be more active and while certain parts of the brain didn't recover the brain the being the wonderful organ it is adapted, he had to re learn many things, and we tought he would never walk with out a frame for the longest time, but he's a stuborm bastard.

He still has to watch his diet and the balance of his meds (aside for the heart condition there are other long term illness factors invovled) he gets tired easily but he is there.
He's back roaring abuse at the tv and buttonholing politcal canvassers who are unfortunate to ring the door bell and writing letters of complaint to the council.

Post stroke can be very, very bleak, there is no way to know or measure how much of a return a person can make but alot is possible if they have support and stimulation needed. Talk to the stroke team incharge of your Dad's care, get as much info as you can.

LegacyUser

Thanks Walls and Thaedydal, appreciate your comments.

Walls I know I am only adding to the problem, but what can I do when I seem to be having bad days every day? I wish there was a nurse or someone with from the medical profession in our family but there isn't - so tbh, none of us have a clue & getting lists of medicines etc. from the head nurse at the home doesn't really enlighten us that much. Plus its probably mainly the people who knew him best that realise how much of him has gone - and no one is ever going to be able to tell us if or how much of Dad might ever come back to us

I dont know what topics of conversation to even have with Dad anymore, as everything seems to lead back to him not being able to lead the life he once had and as yet I dont think he understands this. He will ask when we are taking him home, and I will have to lie to him and say not until he is a bit better & then I'll feel as if I've let him down yet again.
I know I'm feeling sorry for myself, I know it doesn't help the situation, I know I didn't do anything that caused him to have the stroke in the first place.

What I dont know is how people live with this & how they can manage to get out of this black hole of desperation and hopefulessness that I'm in. Had a huge row with my OH yesterday as he said I'm never 'here' anymore, my mind is always on Dad & that is not healthy.
I will try & be positive this weekend with Dad, will put on a smile & try to think of stories to tell him etc. But I will be glad when I'm back in the car on Sunday, which in turn will make me feel like a rubbish daughter & thus the circle begins again.
Sorry for being so moaning, dark days for me right now but I really hope there will be light soon.