My Dad had a stroke 8 weeks ago and at the time he had trouble with swallowing and speech. He has minimal mobility in the right arm and leg. He has been progressing really well in hospital and is now eating normal food and speech is much better. We have been informed by the hospital that he would benefit from a more specialist rehab to get him moving, but there is nothing close by. We have been offered Putney, Queen Square, North Wick Park and Homerton. He has already been rejected from North Wick Park and Homerton as apparently he is too good for them. Does anyone have any experience of other rehab units and do you have recommendations. We live in Essex and are willing to travel within reason.
Colchester has good facilities. I was there and it was just superb. I got A1 medical care and lucky for me didnt need much physio. I recall there being a large gym and steps for me to walk up and down. And a dedicated kitchen to ensure I could get simple meals.
Whatever hapens, do persuade Dad to get every bit of his body moving. Nothing excessive, just wiggle every digit, stretch every muscle and so on. This will not replace dedicated physio, but it will prepare him for whats ahead and reduce any decline. Will he have some follow up when he goes home ? I was an "early discharge" as my wife was willing and I have a bungalow without deep threshholds etc. The EDT taught me everything, and especially the simple physio for me to do.
I would also ask the SA. And my local GP surgery. And my village Chuch ( a fantastic source of contacts).
The support for stroke victims is almost non existent. The NHS cant handle our requirements. A long slow recovery. Try to find local stroke groups for Dad to attend. And for his family carer.
I live in deepest rural Essex and no way can I travel to Northwick Park or any similar distance. Thats about three hours by train or two hours by taxi. If you are situate in the West of the county then it could be a different story.
Good luck Sarah and please say hello to Dad. And tell him I was substantially paralysed but nearly everything works now. Except travel.
Thanks Colin that all sounds really positive, how long ago did you have your stroke? We dont live far from Southend so Colchester could be a possiblity, I'll have a chat with the hospital tomorrow.
The stroke bit me on 13/12/2015, so I am now over 1,000 days or 34 months along the recovery journey.
IMO it is very important for Dad to be positive.
Another lovely day here on the East coast.
Dad is really positive, he is just keen to keep improving. He is exhausted most of the time and it takes loads out of him to even talk to me. Getting more info from the hospital at last re his rehab. Great that you are still helping others as it is a comfort to speak to someone who has been through the same. Lovely day here too!!!
This is taking me back to the early days. It was agony to listen to someone and reply. All I got was a load of noise coming at me. I had to decipher the words, put them in order, try to grasp what was meant, then get a sentence together to reply. My mouth then struggled to make the reply. I had to explain to my wife that I really did not want conversation. She soon twigged and brought her books and knitting. She sat with me for many hours, reading the paper etc.
I couldnt get anything from the lockers as my neck wouldnt let my head move. I was locked in the bed with railings. Not that I could move let alone escape/fall out of bed. My miracle then turned up as one morning I awoke with energy and adrenelin flowing through my body. Five physios came to my bedside and I stood up and then walked out the ward and up the corridor. OK it was wobble stagger but I was walking. It all seems in the far distant past. I was positive, very positive and very determined. I had only just retired and was enjoying my retirement so much. A silly stroke wasnt going to stop that pleasant lifestyle. Well thats what I thought. And that sudden miracle improvement does seem to occur to many of us. I am cribbing someone else, but we use the term "a whoosh". Very nice when it happens.
The stroke fatigue (medic speak is "post stroke tiredness") was horrific and I had to sleep perhaps ten times each day. It wasnt tired sleep. It was wonderful, deep, dream free sleep and I woke up without the usual yawning, stretching etc. For me, and not for many of us, the SF hasnt repaired itself. I still need lots of naps and I get exhausted so easily. But its better than it was and I get some quality of life. I drive short distances. I get up a step ladder.
Maybe its too soon to explain to Dad, but I think you need to prepare yourself for the fact that the recovered Dad will not be the same as he was pre stroke. So he will not be getting back to "normal". Thousands of brain cells have and they dont regrow. So his brain is busy rewiring itself to keep Dad alive and then make physical improvements. The emotional side is upsetting. My emotions are shot to pieces. Also I can not think like i used to think. I am an expert in pensions and personal tax but I can not get back to any of that. I make tea and serve tables. But theres nothing wrong with that and its quite rewarding.
It is such a long journey. Nothing else is comparable and few understand us.
18 to 24 months seems to bring a bit of settling. So many things stop working properly.
Dad and me were both chosen to live and no doubt we both will serve a purpose as our newly found selves.
I do prattle on
Thanks Colin - I know your message was for someone else, but I love your prattle - don't stop, it's kept me going through the last year, I've learned so much ?
You make so much sense and it’s good to know how Dad maybe feeling. He was such an active man, played golf every week, worked 3 days a week, drove everywhere and was the most caring man I know. Mum is going to find it tough to get used to the new Dad as he did so much for her. I have started a healing diary as at the moment he can’t see an improvement but there is one. I love your prattle!!! It does remind me of my Dad. Knowing Dads tiredness is normal is a comfort and he does tell me that it’s good for him to sleep. His emotions are all over the place, he cries all the time, when he sees us, when he moves his leg and when he is doing physio. I’m getting there and I know it has only been 9 weeks! Just a frustrated daughter here!!! Have a great weekend and thank you.
Hi Sarah - you will always get good advice on this site, from people who really know what you're all going through. Colin is a great source of information and ideas, glad his comments have helped you, as you will now be able to reassure your parents, and hopefully feel reassured yourself.
Take care, make sure you all get sufficient time to rest ?
Healing diary is good. How we describe levels of SF etc is difficult, but probably you will do it better. Us SS are not on the best form of our lives to get clever writing.
I am not macho man, more 8stone weakling.I am however very masculin and to cry was embrassing. Thank goodness its 95% gone. Many of us comment how fit we were. I guess if we werent fit then we would not have survived. I note my last mail was censored. Hope it still made sense. Seems we can not write the word defined as ceasing to live.
A big help you might wish to consider is trying to stand back and grasp how slowly the recovery happens. We are not geared for such long recovery periods. People just get fed up with it and are inclined to drop you as a friend.
Soon on your plate will be the need for you and even more so your mother to look after themselves. My local stroke group has days dedicated to carers. They even have days out together. On day one I sent my wife away, (for lunch)realizing she couldnt sit with me all day every day. When I got home I insisted she had a few hours to herself. She likes shopping so i encouraged her to go. Or to cioffee mornings, tea with the neighbours etc. Early on she also went away for four day breaks. She still does this every month. It teaches me what I need to do to be independent and it clears my thinking. It also enables me to go at my own pace.
Please say hello to Dad from me
I did have a day today when I didnt see Dad and I did feel guilty all day!! But I know that I need to have some time to myself as well as my Mum. She did go away with some friends the other weekend (something she had planned before Dads stroke) and she had a really lovely time with good friends, she felt guilty and worried about what others might think, but as you say it is important for her to look after herself to. Dad knew she had gone and was more than happy for her to go as I was still around to visit him in hospital. Mum said Dad was very tired and emotional today and did not want to get out of bed. I think that on a Friday after 5 days of physio he is tired and needs the weekend to recharge! Hopefully when I see him tomorrow he will be on top form. I will say hi to him from you, not sure he will understand about this forum yet but I will try and explain how important it is for us to speak to other SS. Have a good evening and speak soon.
Thank you for your comment
Dont feel guilty. If you and/or Mum try to do caring 24/7 then you will fall down ill yourelves, and Dad needs you. So have your breaks.
Thats excellent that Dad was happy to let Mum go away. Thats the way I looked at it.
And Dad needs time for himself. our brains just do not work well and we need to go at our own pace every now and again.
Personally, I will not stay in bed during the day. I get up and get dressed and have done so from the first day home. When necessary I have laid out on the sofa or on my bed (not in it) or in the spare room. I feel this is a step towards creating my new life.
No two strokes are the same, but many of us have many of the same problems. SF is probably the biggest problem. At Dads stage I like to think that his brain is turning him off whilst it rewires itself (Neuroplasticity). Just my way of looking at it. It is important that Dad drinks copious amounts of water. His brain is like a bubling cauldren, overheating. And the brain has no feelings so it doesnt issue "i am thirsty " messages. It just nicks the water from other parts of the body. I detest drinking the extra water. But I detest SF even more.
We have good days and bad days. Even now that applies to me. It was a huge issue in the early months. So never expect he will have a good day. Bu all means hope he does. It took ages for me to work out when good/bad days arise. Go to bed with SF and you wake up with SF. BAd sleep Monday probably means a hard Tuesday and a not too clever Wednesday.
Tired sleep, as opposed to stroke sleep, is vital for me. If I get 6hrs rather than my own needs of 7.5hrs then everything goes to pot. The SF cruisesin, I trip over things, my dexterity fails and my memory goes to pot. Tired sleep is so important. And rest. Endless rest then more rest.
I would not have coped with any forum until about two months in. I have lived with computers for many years, so I am not afraid of them. And the old forum was so much easier to use than this current version.
But do let him know a fellow SS is thinking about him and sharing my experiences.
Hi Colin, Happy Saturday!
Today is a good day, seen Dad this morning and he has a cold!! That is why he was feeling so rubbish yesterday. He managed to tell me that he didnt know what was wrong yesterday and was scared at what was happening. He feels a little better today and I spoke to him about the forum and about you and how you were helping me to understand how he was feeling. The SF is really kicking in at the moment but I have told him to keep drinking water as this will help his recovery. I took him to the Costa in the hospital today and he loved the normalilty of this. Mum has gone out with some friends today, Dad was pleased that she had gone. Left Dad reading the paper today and feeling very pleased with himself after he managed to eat his dinner and open the salt and pepper sachets on his own!! Everything is a bonus at the moment! Looking forward to an extra hour in bed tonight and whatever tomorrow brings... bring it on! Sarah
Sounds as though you have had a better day - best of luck. The BBC (website) had a story today about a man who lost his speech after suffering a stroke, 4 years later he just suddenly regained the ability to speak, so you never can tell what your brain is up to, even when it seems as though nothing is happening externally! ?
Thats so good to hear. Dad is clearly determined to recover as much as possible. Thats so very important.
In my first year, numerous odd illnesses plagued me. What might be a nuisance ailment becomes a big issue. Our brains have to re-learn whats going on and when you are the age of me (and Dad?) its a long haul ahead.
I too have a cold. Not a bad one at all. One oddity...I get toothache when minor pains are due to arrive. Its not my teeth, but it is just like toothache. Apparently that happens for a number of people as a heart attack gets them. Its our brains unable to exactly pin point the pain and so giving all the wrong messages. I also suffered from echoes. My brain couldnt process an eck ho and it sent me into quite a state. It took me months to work out that it was echoes. I then soon got it under control.
I recall the feeling of achievement when I could eat my dinner. One bonus of a stroke for me, I used to be a fussy eater, now I am not. I really liked the hospital food.
In year one the SF came in waves, every two hours to start with. So I would sleep (stroke sleep) for 45 minutes then would be OK for an hour and more.
Please have in mind that all I can advise is what I have encountered, plus a few bits from fellow SS. Prompt recovery within a few months does happen for some and that could be your Dad. Never ever give up. Just do the best you can, which is mostly resting and sleeping.
Turned cold today.
Still plenty of sun
Well another week finishes, 9 weeks since Dads stroke now, he was good today and we can definately see an improvement in his speech and face. He still has a cold and bad cough but apart from that well in himself. Mum and I are feeling very emotional today, think we feel that it is getting harder for us. We are really apprehensive of the next steps and where his rehab may take him. Whereever he goes he will be scared and it will take time for him to build confidence in the new team that will be helping him. We are just playing the waiting game as at present there is nothing definate as there is no bed available at the moment.
Im back to work tomorrow after a week off so that will be difficult to get back into, then hospital in the evenings. Onwards and upwards...have a good week, speak to you soon. Sarah
Thats good impovement for Dad. So pleased.
Stroke recovery is long. No one is prepared for the timescale. We all expect to get better from an illness and that 3 months is the max for that. Stroke is different. Dad isnt going to get better in the way we talk about other illnesses. He is a new Dad and he is learning how to make his new life the best he can. So you guys need to prepare for coping with a long recovery. Dont wear yourselves out, Dad will need you, long term.
My cold is as minor as it gets. Usually I suffer from a cold but this ones not bad at all.
Yes, Dads confidence is pretty much shatterd right now. He needs to rebuild over the coming months.
Pity he has to wait for a bed. Hopefully it wil be a good place and worth the wait
Well another week and winter is definalty here! Dads cold is improving and Mum said he was good in himself yesterday. He didnt do much physio yesterday because his calf was hurting, they have suggested that we massage it as it is tight. He talked to Mum yesterday about coming home and Mum explained that he needs more intensive rehab. He also said to her that he thought wouldnt walk again, she said it would take time but he will get there. Still no news on the bed situation, dont want Dad to get institutionalised in the hospital environment.
Hope you are well, thanks again for all your comments, they are really helping!
Hello Sarah, it’s lovely to see the progress your dad’s making and the support you’re giving your mum. Take care of yourself, too Veronica and John