Since my husband had a stroke just 14 weeks ago I have been reading posts on this forum and would like to share our journey so far.
He spent 13 weeks in the stroke unit of our local hospital, now since last Friday he’s in a nursing home for 4 weeks in an assessment bed before coming home to be looked after by me.
He has left sided weakness, incontinence, speech difficulties and cognitive impairments.
The rehab team were unable to further improve his walking, he can use a gutter frame with 2 people to support him but his left leg drags and his concentration is poor, he’s easily distracted and tires after a few steps.
His speech is often poor and I have great difficulty in understanding what he’s trying to say which causes him deep frustration and anger.
He’s able to write things down but his writing is usually as muddled as his speech so makes no sense, we try to use an app which the speech therapist recommended but it’s not working well for conversation, mostly just basic commands or requests.
When he’s discharged from the nursing home he will need a full care package, our family are not close enough to be able to help so I do worry about the enormity of the 24/7 caring role ahead of me.
The most difficult of his symptoms for our family and primarily me to deal with have been the psychological ones.
He began in weeks 2-3 post stroke being very distrusting and fearful of night staff, it was aweful to witness, over the following few weeks he had to be frequently restrained by hospital security and given sedative injections, this became a nightly occurrence and further fuelled his distrust and paranoia. This also happened during the day eventually, with him being aggressive towards day staff and some patients.
He was referred to the deprivation of liberty and safeguarding team at that time as it was felt he was unable to make his own decisions.
He was seen by the psychiatrist who eventually managed to calm his paranoia with medication and that did settle down. The medication had to be titrated slowly until the required dose was achieved so it took about a month.
During this time though he became extremely hostile towards me, after 30 years of having a funny, kind, loving and trusting husband, he changed and became distrusting and paranoid, he’s still now sure in his mind that I’m having an affair, he calls me the worst names and uses language towards me that he never has before and has called me evil.
My heart breaks still every time this happens, I know I shouldn’t take what he says personally, but how can I not, when the words are coming from my husband?
Our family have thought it has been because of him feeling frustrated about being in hospital and that when he comes home his brain will calm and these episodes will go away.
Now after a challenging first few days in the nursing home he appears to be calming but continues to have outbursts of anger which just come from nowhere.
He’s often tearful and looks really sad.
The staff are lovely and are fully supporting me to get him home.
They have told me they are seeing cognitive problems over the few days he’s been there.
I rang the ward yesterday because the community physio team have not seen him yet and I was told they wouldn’t see him whilst he’s in the home as they felt it wasn’t the most effective use of their resources, after me asking they have agreed to see him next week so a report can be made for the social worker in his assessment prior to discharge home.
I’m really not sure how I will manage, I’m 67 so retired and have the usual decreased energy levels and aches and pains that come with getting older, my husband is 77.
Like so may people n this forum, our lives have changed completely but how do people manage to take care of themselves through it all?
Any advice will be greatly appreciated Thankyou.
