1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Just when things were getting sorted...

Discussion in 'I have a partner with dementia' started by SandraKD, Mar 13, 2019.

  1. SandraKD

    SandraKD Registered User

    Nov 26, 2018
    36
    OH has had a stroke and is now in hospital!
    We had literally just got approval from the LA for a care package, a bed lever and walker from Domiciliary Physio and a referral back to the Dementia team process started when OH had his stroke. This happened yesterday.
    I had also changed the carpet in his bedroom for a vinyl floor, thank heavens, because, after he tried to get up while feeling not right and fell off the bed, he was doubly incontinent all over the floor, himself, the radiator, chest of drawers and bed base.
    I can't praise our local paramedics (with us in 6 minutes) or the hospital staff, all of them from A&E, through Admissions to the Acute Stroke Unit, including the Physio's and OT highly enough, they have all been fantastic.
    OH is currently waiting for an MRI scan, but the stroke is affecting his left side. He has lost vision in the lower left quadrant, delayed or no feeling on the left of his face. Can't grip or control his left hand or feel when it is touched and is currently bed bound and not walking.
    Bam! Just like that, the whole world gets turned upside down.
    I have no idea if he will get any function back or if he will be able to come back to our house - physio and OT are awaiting MRI too...
    It is his 61st birthday today, I'm so sad for him being in hospital on his birthday. But we (my daughter and I) took him in a cake, cards and a couple of his favourite treats. We got a big cake and we told the staff to dive in and have a slice after we shared with his neighbours on the ward that could eat cake safely.
    Future is very foggy at the moment.
     
  2. chickenlady

    chickenlady Registered User

    Feb 28, 2016
    94
    61 is no age to be in such a terrible state, you must be feeling exhausted from the last day's events. Don't forget to take some time for yourself whilst he's in hospital. This level of intense anxiety and change will take it out on you. Take some time out, trust the hospital staff, good luck.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,890
    Female
    South coast
    Im so sorry to hear about that @SandraKD .
    Try not to look too far into the future
    ((((((((((((((((((((((((((((hugs)))))))))))))))))))))))
     
  4. Banabarama

    Banabarama Registered User

    Dec 28, 2018
    33
    Female
    Sussex
    What a dreadful day for you both. 61 is so young. Take care and come back and talk more.
     
  5. SandraKD

    SandraKD Registered User

    Nov 26, 2018
    36
    Today was a better day. OH went down for his MRI scan today, that took 2 hours, results tomorrow on Doctors rounds. I got given the Butterfly scheme's carer card today which means I can be at the hospital whenever I need to be. That's a big help.
    Saw some small improvements in movement and he was a lot more alert today, so I am taking some hope from that. It may be a fools hope, but I feel better about things today.
     
  6. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,728
    Male
    Bristol
    Sorry to read of your husbands stroke, SandraKD. It's such a hard time for you both, and I wish you strength.
     
  7. SandraKD

    SandraKD Registered User

    Nov 26, 2018
    36
    Thank you all for your replies and support, you are all wonderful. I shall keep posting with progress reports. Xx
     
  8. SandraKD

    SandraKD Registered User

    Nov 26, 2018
    36
    So, results of the MRI show two strokes, one affecting the occipital area and one affecting the right frontal lobe. The stroke was caused by clots, not a bleed, so no surgical intervention necessary.
    Next steps are to go to the Stroke Rehabilitation Unit where the physio's and OT's will see how much function they can get back. Just waiting for a bed to become available.
    He has now regained some movement in his left arm and hand and was able to grip my fingers when asked, this is a good improvement as he couldn't move it on Thursday. So, we are seeing small improvements every day which is giving us hope that he may be able to come back to our house, with some extra help/adaptations
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,133
    Kent
    I missed your original post @SandraKD so sorry to be late in hoping life will get better for your very poorly OH.
     
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,921
    Suffolk
    Hi, my mother had a stroke at about the same age and she recovered most of the function she lost, but not all. Rehab has progressed a lot since those days (1978) so there’s lots of hope!
     
  11. SandraKD

    SandraKD Registered User

    Nov 26, 2018
    36
    Hi GrannyG and Spaemar, thank you for your kind responses. There is indeed hope, OH is regaining function in his left side again every day, so I am hopeful that things will continue to improve. I will keep you posted. Xx
    ((((((HUGS)))))) to everyone who needs one today in this strange world we inhabit. Xx
     
  12. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,284
    Female
    South of the Border
    It is a very strange world we inhabit - and you are very brave though - keep looking after yourself......
     
  13. SandraKD

    SandraKD Registered User

    Nov 26, 2018
    36
    Yesterday's visit started well, he was up in his chair and he had been walking down the corridor with the physios, who were very pleased with him. He can also now get out of bed on to a commode to go to the loo, with two nurses helping him. All excellent progress which everyone has praised him for.
    Then, the Staff nurse came and told us that he was being discharged to the stroke rehabilitation unit, possibly today. OH just heard discharged and thought he was coming home!
    Then the confusion and anxiety and odd behaviour started, phantom feelings in his left hand, seeing things from his left eye that he couldn't understand, and then not being able to see things... He was very upset and anxious when we left, and was asking how to "get out of here" and "I want to go home". I had a chat with the Staff nurse because I thought his left pupil was a bit dilated too and she said they would get the stroke nurse to see him. When that is likely to happen goodness only knows!
    I will phone soon to see how the night went....
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,252
    Please keep in touch, it is sad that hospital staff do not seem understand the need for simple explanations and reassurance. I work hard to avoid anxiety as it compounds problems.
     
  15. PalSal

    PalSal Registered User

    @SandraKD
    We are all thinking of you and your husband.
     
  16. canary

    canary Registered User

    Feb 25, 2014
    9,890
    Female
    South coast
    Seeing things that are not there is common after a stroke. Its probably Charles Bonnet syndrome. If the stroke affects your sight so that you lose an area of sight (usually one side) then the brain tries to fill it with images from memory/imagination - a bit like a waking a dream. The phantom feeling in the affected limbs are the same sort of thing.

    Im glad he is improving. Rehab will be better than a hospital ward.
     
  17. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,728
    Male
    Bristol
    Sorry your husband got confused and that set off so many other problems. I don't know the ins and outs of that one, but remember the stroke rehab unit were great with my OH when she had a stroke 8 years ago. They also set up OTs and physio for about a month afterwards, so hopefully your OH will be given time and support to adjust. Wishing you a better day and I hope he is more settled again.
     
  18. SandraKD

    SandraKD Registered User

    Nov 26, 2018
    36
    Thank you to everyone who replied, particularly @canary for that clear explanation of what was going on. Yesterday was a much better day, even though he was grumpy because "they" wouldn't let him out
    A little bit of mild sundowning when we left at 7pm, but no anxiety or confusion.
    It is sad that some of the staff can't understand that they should tell me these things and I will relay the information at the right time to prevent all that distress! Some of them are just lovely with him and have understood his limits, most of the staff there are wonderful with everyone and yesterday's Charge Nurse was so kind in calming my fears, I am glad OH didn't get transferred yesterday.
    Here's hoping for a better day today.
     

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