well unfortunately my worst fear happened...a medical event...had to take hubby to hospital on saturday , suspected perhaps a mini stroke as he just kept falling over when i tried to get him out of bed...he's probably early stage 7 and non verbal so the last thing I wanted was a hospital visit as I expected a total disaster...well didn't he surprise the daylights out of me...despite all the many strange faces, needles for bloodwork and IV's he seemed totally unstressed about it all each and every time I went to the hospital during the 4 days he was there...Social worker at the hospital asked what home care services they could set up for me in the event I wanted to take him home as opposed to going into long term care which he is currently on the wait list for...We live in a 3 level split house so we have stairs everywhere and he was assessed by occupational therapy as requiring a transfer belt to be worn when walking with other person holding onto the belt, so they said they would send over a hospital bed and a commode chair and a wheelchair should i need to take him anywhere where mobility may be an issue...then she said they could have homecare workers come to get him up, changed and dressed and washed up in the morning, ready for bed at night, come back for meals or diaper changing, plus set up bathing several times a week...I was totally floored that all this help was available...after it was determined what services i would like, arrangements were made to have bed and commode delivered tomorrow at which time he can come home...I asked what the rental cost on the equipment was and was again floored when she said there is no charge....say What???? no charge for equipment and no charge for 4 days in the hospital...Am very fortunate to live in Canada and have these privileges and for the first time since his diagnosis a little over 2 years ago, i feel a little less pressure on me and for that I am grateful...Sometimes a little light shines into our lives...All we can hope for now is hubby's acceptance of his new sleeping area...fingers will be crossed and will be sleeping lightly
Wow - a lot to go through but so glad you found out and are going to get all the help that is available. I do not think you are alone in realizing what is out there despite our efforts. Get some rest.
It sounds like you may not be fully informed of what rights you have. Each province is different and in Ontario we get assigned a case manager by CCAC once the diagnosis is made. My wife was stage 6 or so when I asked for help and they provided me with up to 12 hours of home care a week where I could go out and get things done or just get a break.
If you were diagnosed two years ago then whatever province you live in you are entitled to some help and I mean workers coming to your house relieving you for a little while or providing a service like showering your husband. Has someone talked to you about ongoing support for you? I'm sorry but I forget which province you're in.
Wolf I am in Manitoba...I have had respite care for over a year now, i can get 16 hours a week and there is no charge...i currently use about 8 a week, 4 hrs twice weekly... hubby had no medical issues that needed daily attention and i was managing him at home quite well...plus hubby is very quiet and docile and for the most part cooperative with everything so i never felt i needed anything other than respite care...according to the social worker there is no limit to the amount of homecare i can get at no cost to us which is quite fantastic...for now i have requested someone to come in and do his spongebaths twice a week (refuses to get in shower and probably best to keep him away from stairs now)...once he's home i will see if we more or less go back to old routine which was fine...once he's been home for a bit i'll see if I need more, but for now glad for the help ive received and a little apprehensive about the changes, but then again I absolutely abhor change of any kind lol
Also I do have a case manager who was great about getting the respite care set up and getting hubby panelled for long term care placement...and as we had a pretty stable routine at home I was hoping to be able to stick to my plan of keeping him safe and healthy until placement which depending on how things go now the optimum time is probably late summer, so i feel there is a light at the end of the tunnel as far as caring for him at home, he's declined so much in just over 2 years that placement will come much sooner for me than many others that have a much harder and tougher road to travel...the good news about placement is that seeing how he reacted so well to all the hustle and bustle, poking and prodding and strange faces at the hospital, i feel much more confident that he will transition to care home much much better than I initially thought and that is a good thing..