Hi everyone. I joined back in 2012 or 13 I believe, after my hubby was diagnosed at 62. Although I've read the message board once in awhile over the years I haven't really contributed. He is now late stage 6. Very rarely knows who I am, gets lost in the house, shuffles, eats with his hands, and actually needs help in all aspects of daily living. He is still at home as I am lucky enough to have our 26 year old son help, as co caregiver.
I was friends with Charlotte on Facebook for awhile and her advice helped during those first few months after diagnosis.
There it is in a nutshell. I didn't want to just show up without re introducing myself. I still recognize some of the names posting here which is quite comforting. Including Charlotte.
Hi Julie. I am a little behind you. Hb started having difficulties in 2009. Worse in 2012. Diagnosed in Jan 2015. I, too lurked for quite awhile cause some if the discussions were so scary. I guess my hb is stage 5 or 6. Idk. Just started Adult Day Care and medication for aggression/agitation.Hb is now almost 75. I just turned 64.
Welcome back. I too am grateful to have Charlotte as a friend.
julie55 - I noticed you're from Toronto Canada. I'm just wondering if you're receiving any support from CCAC? I know CCAC offers a lot of programs, however I heard CCAC made a lot of cuts. I lived in Ontario all my life until we moved to Gatineau Quebec 5½ years ago. This province doesn't have many programs, which made it more difficult to keep my husband at home. I often thought I might have been better off staying in Ontario - but wondering if CCAC could have helped?
Hi bhv. Thank you. Yes my hubby goes to daycare too. Was just put on Seroquel originally because of wanting to go "home" and more recently because of crying. He was sent home from daycare last week because of crying. It is so sad. We are doing our best to keep him at home as long as possible. i hate this disease.
Nicky his daycare is subsidized. I pay 31 dollars a day. As for in home care from CCAC, now called the LINH. they only offer 3 hours a week for bathing. I find it easier to walk in the shower with him and do it myself. It takes me about 15 min to shower, shave and brush his teeth. I would be on their schedule if I accepted their help, which could be offered on a day he goes to daycare, or in the middle of the day. So far my son and I are a good team. Thanks for your input though I really appreciate it.
Nicky, there is a new program in the area, in English, called Connexions. I'll see if I can find the contact info for you. They act as a resource centre so that you can get the help you need. Personally, I found the Quebec CLSC helpful when hubby was at home, but they have recently scaled back on the services they offer. Which is a real shame, because the need is so great!
bqd - thank you for the info. I know about Connexions. I receive their emails. They've only been a little helpful for me.
I didn't find the CLSC helpful - I called them periodically for almost 2 years requesting a social worker, because they couldn't offer me services without the worker. The only thing they offered was talking to an occupational therapist. Finally got a social worker. but 5 months before he went into residence. The social worker was good, because I finally had a contact person, but the services were limited & there was always a waiting list. They don't have many programs in place to help & when my husband was accepted into the few programs they offered, he was put on a waiting list - we needed the service right away, not 3 months later. In fact the only service he received during those 5 months with the worker was a 3-day respite, which was very helpful. However, once he became priority on the long-term care waiting list, things progressed fairly quickly.
We come from northern Ontario & after moving here, I was in contact with the Ottawa Alzheimer Society for help & suggestions in dealing with the disease. I found out Ontario has a lot more programs & support for in-home services - this province barely has any. But, the good thing this province offers is a lower monthly rate in long-term care - lower than in Ontario, so I'm happy about that.
I'm sorry you had such a disappointing experience wit the CLSC, Nicky. As I said, their services have been cut back in recent years. We don't even have a social worker for my area.
How long has your hubby been in residence?
I also found the Ottawa Renfrew Alzheimer's Society to be very helpful in terms of the knowledge they provided. And I am very grateful for the lower cost of LTC in Quebec. If I lived anywhere else I don't think I could afford it.
bqd - In June of last year, he was placed in a private residence for 5½ months, which didn't really work out. Admitted to his 1st long-term care in mid-November, then his 2nd at the beginning of January - this facility is much better & suits his needs. So, now he's in Aylmer, just 6-8 minutes from my home.
Nicky, Hubby was placed in Junee 2015 in an ntermediary care facility, and moved to LTC in Shawville in July of 2017. While at the intermediary facility, he was still able to go to day centre and I could even get him out for church, picnics etc. But last year his level of care needs escalated, and he was moved to LTC. He is well looked after there.
I felt guilty. After he was initially placed. Not for placing him, but because finally after years of feeling I was a prisoner in my own home, I could finally go out and do the things I enjoyed, without worrying about hubby or living within the constraints of day care or sitters..
Nice to see you back. My dh has been in LTC here in Kingston for..OMG it will be five years on September 19. It has been a very difficult journey. he is now having trouble getting his thought from his brain out his mouth. He says he is so tired all the time and sleeps quite a bit more now. His problem is all behavioural and now memory. Have you heard anything from ring?
Julie 55 Three hours a week help is just not enough. I wish these people who make these rules would spend a few weeks in our shoes.
Nicky Where do you live? The Alzheimers society here has so many programs. They even have daycare for three hours, I think twice week.
I did keep. In touch with rin, and we even got together as a foursome a couple of times, or she a d I would have lunch together. But I haven't heard much from her lately-the Lat time was at Christmmastime.
She has been on my mind lately though, so maybe I should give her a call.
bbq is rings husband in advanced stage now? This site sure has changed since we started.
Nicky
my husband is in LTC here but I still go to a support group for caregivers who have partners in LTC. It helps as his behaviour really gives me stress. The person in charge of that group has years of experience with his kind of dementia, so she is a real help. It gives me someone to vent to.