Helpless and

Aphasia and communication
#1

Hello, 

I am very much in need of some suggestions on ways that I can communicate with my father. Last Tuesday he had a stroke and because of the Corona virus he hasn't been seen by a family member since. We are calling the hospital daily and speaking with Dad, but recently he is being reported as being asleep more than before. Aside from letting him know were still there and hearing that he’s still fighting, there are no meaningful engagements. We desperately need a medium to communicate with him during isolation.  

I have wondered it be feasible to ask his speech therapist to use a telephone call to us as therapy in some hope someone could bridge the communication gap.

Or my brother was thinking we could send an iPad to him with some communications apps installed. I am just not too sure how much dexterity he has and if touch screens are very accessible from someone in Dads current position. Can anyone provide any insight please on if this would be a good route or just frustrate Dad. 

We feel quite powerless and we are struggling to keep our imaginations under control without some line to how Dad is feeling and what he is trying to say.

#2

Dear Sholto

I was 68 years old and had a less major stroke from which I have had an excellent recovery.

In the first week I mainly wanted to sleep. Then sleep more. My brain needed to work out what damage had been done and then start to repair as best it could. Medic speak for this is nero plasticity.

My wife visited every day, for several hours, but I asked her to knit, read, go for coffee etc. I hated visiting hour because the talking was offending my brain. Brain needed to close me down whilst it worked away.

Even so, I did ring out to my two adult children and this was quite sucessful. Just a regular land line call from hospital bedside phone.

I tell you all this to help you grasp what is probaby happening with Dad. I had physios when needed and generally a very decent level of care. Dad is likely to have the same and can probably cope without you guys in the short term. A major landmark is when the doctors pass you as medically fit, so do listen to any such references. For me I was then able to come home, to an ideal bungalow, all flat, no steps, bathroom next to bedroom and wife to keep an eye on me. I also had daily care from a specialist team, for six weeks. 

It must be terrible for you to have been cut off from Dad. It is such a difficult time, without this wrteched virus. As soon as the hospitals started to close down I immediately thought of people having a stroke, just as your Dad has.

The stroke association leaflets are good. You might wish to read them, but remember that Dad wont have all the mentioned symptoms, he will have just some of them.

Best wishes

Colin

 

#3

Thanks Colin,

im Sholtos brother and his post speaks for all of us. I just read out your reply to mum and it provided some comfort to her so for that I thank you. 

#4

Hi, My dad had two strokes two years ago. The effects of his first stroke were lose of communication skills and his sense of humour. I must say at this point both have come back not 100% but at least 90%.

dad was extremely tired for the first month after his stroke has found himself getting really frustrated not being able to communicate. The speech therapists are excellent I would try and have a chat with them and be led by them re some advice on different ways you can still communicate with your dad in this unprecedented time.

take a day at a time it is a long road but he will get there. I found the site excellent for support especially from the stroke survivors on this site.. which is what your dad and mine a survivor. 

Finally make sure you look after yourself as when he does come home he will need your support.

take care keep safe xx

#5

Hi there I am in a similar situation but my partner couldn't speak he has been in hospital a week and a half with no visitors the nurse caring for him keeps saying he's sleeping but have found out people who have strokes sleep a lot. I have also just been told this morning that his speech has started to come back its still early days but hope to speak to him shortly. I was thinking too about ipad or something but don't think he would be able to use it.  I am just hoping to speak to him. I will be thinking of you and your family and hope things settle so you can see your dad and if not possible that you can have more communication with him soon. 

#6

In the first week or two, I really wanted to rest, sleep then rest some more. Some of us have as much as 22 hours a day for sleep. I also did not want to converse. Words had become a lump of noise that attacked me. I had to sort the lump in to words, sort them in to order, work out what they meant then try to speak back again. That was a lot of energy.

The medical staff will be carying outthe scans and tests as appropriate.

An ipad can perhaps follow when your partner is home. I did use the handy bedside hospital phone with some success. Just a few words, not a meaningful conversation !

I was talking within six months and I was walking within weeks. I got a pretty full physical recovery then a slow but steady cognitive recovery. Its all slow, slow, slow. But recovery does come.

I was a clot not a bleed.

68 years old, pretty fit.

Best wishes

 

Colin

#7

I just wanted to thank you both for your kind words, they did give us all some comfort at a time when we were all distressed.

It is with much sadness that I have to report that Dad left us on Tesday following a further stroke this time effecting his loungs.

Thank you both again for the support.

#8

Hi Colin thank you my partner has this evening moved out of the stroke ward and is now in a rehab hospital. The hospital they have moved him to is 30 mins drive away from here. The main hospital is only 5 minutes from here. Yes I think he must not be speaking good as he hasn't phoned so still haven't spoke to him.  It will take time I have realised now a stroke is not like a normal illness and it takes time. I am not bothered how long it takes each day there is something new happens. Last week was very scary also realised they will be bad days too. But I phoned the rehab hospital and he has arrived saftley. He has a view from the window they said which he will love. The nurse I spoke too was lovely so think I will find out a lot more. She put me right at ease as was worrying. As he doesn't travel well. 

Thankyou

 

#9

Spot on Feefee. 

Perhaps hubby is just too overwhelmed to work the phone. We do get overwhelmed rather a lot. But it eases in time.

People do not understand stroke and it is nice when I read your comments, which shows you are getting the right idea.

Shame its an extra 25 minute away. At least there isnt much traffc around when you/hubby get to make the journey. I have had a lot of trouble with travel. I think its being shaken by the movement. Bus, taxi, car and train are all the same. But I will get over it soon.

Colin

#10

Thanks Colin, my partner now has been getting washed with help and eating now with help .  I am taking some clothes over for him tomorrow the main hospital wouldn't let me take them but the rehabilitation hospital asked for them I am to just drop them off at reception. Each little step is a improvement and road to recovery. I think he is doing marvellous already as just over a week ago it was a struggle for getting washed and feeding. He must of been worn out yesterday as he slept a bit yesterday afternoon but the unit said he did a lot of therapy yesterday. But sleep will help him.  Originally they said 2 to 6 weeks but when consultant phoned said it will be 6 to 8 weeks they are hoping he can come home in. Be nice if it is 8 weeks as its just before my birthday which will be a lovely birthday present. It doesn't matter if it isn't as long as he keeps improving but do know they will be bad days too.

Take care. 

Fiona

#11

Dear Fiona

That sounds positive. And us SS have to be positive. After all, we have been chosen to live when many pass away, so we are specila and we need to do something with this gift of extra life.

It is so important that we get ourselves improved. It is down to us and no one else.

The recovery is so slow. 8 weeks is just a drop in the ocean of recovery.

Yes he will be utterly exhausted. His brain will be bubbling with the effort. Sleep, sleep then rest and more sleep.

We get good days and bad days.

He will also have some solace in not having you visit....it takes a bit of pressure off you and he will be very aware of that side to the situation. I had to make a big effort to chase my wife away, so that she got a break from me. 

Best wishes

Colin

#12

Hi Colin spoke to barney's speech therapist today he has aphasia. He can count 1 to 10, can say the days of the week, he is also using a picture board to point to what he wants I. E. Bed, chair, bathroom. He can also say yes or no. He hasn't got the alphabet yet but I am so pleased he has got this far. He is also on mashed foods now last week he was still on feeding tube so it's great news. Also I am thrilled to bits as next week  his speech therapist arranging a virtual visit for me. The rehab unit got some ipads delivered the other day and they are in process of setting it up so patients in there will be able to have virtual visits. A lot of positive information I have received today. Bye for now. 

#13

Well thats all brilliant.

When I cast my mind back to early days, all those things were enormous progress steps for me (except the feeding thing, which I escaped) and I am now mobile and within reason talk, write and read.

I di a facetime today and it is unlike anything else. really does take you to the person and their surrounds.

I am so pleased for you

Colin

#14

IPad good idea however I still cannot use my phone adr to two months

#15

This is so hard for you I found my mobile useless in hospital still hard to text after two months desperate towcimynuxate communicate panioad