My wife had a bleed into the posterior fossa - housing cerebellum, on Feb 12th. Head Op. Over 3 weeks in ICU, coma, very nearly left us, but came back. Hospital until the end of May. Balance, co-ordination and general cognition affected mainly. Swallowing came back after a few weeks. Talking has come back. At the end of May she went to a care home. She is just 68, I am 66. Thank god I was actually retiring in March, as have time for all this…A loving family some of whom flew in from Oz to be with her. She’s always had a lot of love and visitors. A falls risk to this day. She has wanted to come home since then, and she has just spent the first weekend at home with me! She accepts grudgingly that the care home is where she has needed to be, but she is 20 years younger than most in there, good as they are…
She has visits every day, and I am there at least 6 days a week. We get out in the garden whenever we can. The mad thing about all this is that I have just retired from a care home company, where I worked for 12 years in charge of gardening! I cant afford that company and we get funded help, but I absolutely believe in the power of fresh air, plants etc which have been the best instant anti depressant or happy pill that we can have! We do pay a visiting physiotherapist to visit and help with balance exercises and general movement, and her son also helps in doing these exercises, as I do.
I have had help from local teams and I hope to have her home, permanently I hope, before Xmas!! Bath lift, grab rails, bannisters etc coming in anytime soon. We have absolutely loved the weekend - her first visit here since February!
Her right side is affected a bit - dribble, shaky hand, dragging foot, but not terrible problems. Probably an average score of low teens in the 3 MOCA tests she has done. We can talk of old times, art, (she is a fantastic ceramicist), music, and many other things, but not remember what she had for lunch or what year it is…(does it matter?) There is so much going on here. Luckily I find it absolutely fascinating as we learn about the brain and its amazing possibilities. I envisage this brain explosion she had…everything blasted into space…dropping down quite randomly and not necessarily in order, at all! And some bits may have been blown out of orbit completely!
One unusual question/sympton/thing…is…sometimes there is another me?! Lets say my name is John. About August time she would start talking of John, when I was with her, as a different person…at first I said ‘wait’ or ‘no’…I am John, dont be silly…but her reaction was almost to scoff!..Dont be silly!..John! John is also another person, her husband, her lover , her partner, and I am also John!
This is difficult to write exactly as it feels, but for her, the other John is just as real! I tried ignoring it. Now, maybe a bit of both, but I try to explain there is only one John, me, and I am her husband etc etc.
We have just had a beautiful weekend and are looking forward to the challenges of her coming home. Late on Saturday evening though, after a very straightforward day, she asked me whether I thought John would mind about me coming home for Christmas!?
I’ve googled this and thought about it and found a syndrome that possibly fits, and a long psychological couple of words that describe this, but not sure whether it is this, so am not using those words here, just to see if anyone else has similar experience first? At first I found this quite worrying, but am living with it now and maybe it will pass, but any shared thoughts on this?
This is my first contribution here. I find it a little scary reading of all these people’s strokes and their medical traumas, and sometimes has made me feel a bit desperate that we really seemed to suffer with this stroke. My wife had an orthoptic stroke last October also, but that only hospitalized her for 48 hours, not 4 and a half months, but thats another quite rare one also I think…they are all so different!
I am going to take on this caring challenge, and hope that home will help her leap onwards and upwards, and hopefully with the support of John(???), or that he gently fades away…
Welcome to where no one wants to be. You’re right, stroke does scramble the brain, but it may also be confusion due to dementia as Simon says.
When your wife comes home you will need support so take any help you are offered even if it is someone to sit with your wife for an hour so you can get out on your own.
Good luck and come back here when you need more help , support or a good scream at the universe.
Janet
Thankyou Simon! I’m just sharing a bit of my experience, but also has anyone experienced this duplicate person thing? Yes, I have worried about dementia, probably vascular, but in recent months have become accepting that it is too early to diagnose as the differences between stroke injury, brain injury and dementia are difficult to work out at this stage. Professionals tell me that if in a year or more, I then think she is actually regressing rather than progressing, then dementia is probably worth diagnosing. The home tell me that many of the residents in their dementia area are not diagnosed, as little point. However, at 68 years old, that is not old to us, so a diagnosis would be important, later. I’ve read that something called Caspagh syndrome or reduplicative paramnesia can occur after stroke, or actual injury, or dementia…I’m living with it better now, it was quite disturbing at first. So, if Anyone has experienced this, I’d love to hear from you. Thankyou.
Thankyou Janet! While would love to hear from anyone about this duplicate person thing, I’m always interested in people who have suffered bleeds into the posterior fossa…
Hi @clubhub1 and welcome to the community. Sounds like you’ve hadca difficult year but you seem to be doing all the right things. I hope your wife does get uome for Christmas.
In relation to the 1 John’s the only time I have come across this is when someone has dementia. However, whilst there is a chance it is dementia it could be stroke related. If that’s the case then hopefully improvements will happen over the next few months.
I know how difficult it is when loved ones start talking about you as if you are someone else - we had this with my mother in law. She was older and hadn’t had a stroke.
Wishing you both all the best.
Ann