My husband, now 67 was diagnosed with spms at 51 yo
Last summer Neurologist advised that now likely alzheimers. Started medication Galantamin in July 24.
Behaviour has become increasingly difficult to understand and keep him safe.
Has gone missing twice now. In the summer for 7hrs and found by police, after a full scale search. Went out on his scooter on 19th December late in the afternoon n it quickly got dark. Weather was awful with storms and cold temperatures.
Last time was a result of me discussing his medication to ensure he had enough for the Christmas holiday.
He got v defensive saying I’m making him take alzheimers drugs n he’s not got alzheimers.
I was on the phone to consultant n his Behaviour was like a toddler.
I then took my dog out before dark n got home he’d disappeared. Obviously this caused big concerns as we live rural area n only lanes no lighting on scooter or street lights.
Long story short he was hiding in a disused farm barn n hid under staw n hay. Ppl looking hadn’t seen him n he’d stayed quiet. 2 x helicopters out, numerous police units, ppl with thermal drones plus our adult children and numerous others from the local community.
He was found at 9.30am following morning.
I’m so sorry to hear that you are dealing with all of this. It must be so difficult. I don’t have anything useful to add, apart from my own recent experience with my mother. She was diagnosed with Alzheimer’s last year, she appears ‘fine’ but we feel she is now fundamentally changed in subtle and not so subtle ways and although we haven’t had anything near to your experiences with disappearances etc, it is starting to get difficult. All I can say to you, is make sure you try to look after yourself in this…put your own oxygen mask on first so to speak. Easier said than done I know, but please accept all the support you can. You can’t support your husband if you are depleted yourself. Good luck with everything x
Thank u for commenting.
Yes, easier said than done.
Ive found out today that there a local care available iro 130 a day. Im definitely going to make an enquiry. Im completely burnt out now!
Unfortunately as he’s got behaviour issues especially around females, its going to be harder to secure any help. V few male staff in this sector.
There is no support from any organisations.
Im likely to die before him from exhaustion. Our 3 adult children do what they can, but that doesn’t run to 24hr care. They all have full-time jobs and children. Everyone is great at advise abd suggesting but no practical everyday much needed help.
Ill just keep going as long as i can i guess!
Hello B, not much help but reading your post is so sad and i really wish I could provide direct help and support in person. My Mum developed dementia during her final years and it is both sad and difficult to deal with.
If I’ve read your post correctly then from what I know as a non medic then it sounds as if the issues, problems that your husband is displaying are a result of the Alzheimer’s. Have you had a look at the Alzheimer Society web site as a source of advice, help and guidance - including on benefits that you and or your husband might be entitled?
Also, just as an aside but do you have Powers of Attorney for your husband’s financial and health affairs?
Thank you for commenting.
Yes I’d agree is more alzheimers than cognitive difficulties from ms.
Today’s been a bad day. Manic obsessive behaviour over regards to his driving licence that was taken away 5 years ago and hadn’t drivem for 2 or 3 years prior to that so, iro 8 years not driving. Isn’t safe, gets lost and is delusional that it was my fault it was removed. Amh actually contacted dvla as threatened to drive car off a cliff to end his own life.
Im completely exhausted dealing with this behaviour.
So hard to know what to do where to start. My husband is in complete denial that there is anything wrong.
Thank you. Yes im aware of the various organisation.
Ive had contact with alzheimers association. They are great at empathising nothing else has come from thfm.
The biggest problem is my husband wont accept his diagnosis, or the medication aim to help. Is unrealistic and delusional. But also just won’t engage with professional help. Hiw do i get through to him as he doesnt have fill capacity. Agrees during conversation onlg to forget any of the concerns discussed.