You folks stateside who are caregivers have absolutely no idea just how good you have it as regards being able to have outside help and resources come in to help you when the time comes that your love one and you need more than you’re able to provide yourself. Here, in Canada, I’m now convinced, the attitude is that our Seniors and those in need of care giving are really of less value than trash and are treated about the same. If the following sounds bitter, it is ……. I’m very bitter and very saddened by the state of affairs we find ourselves in as we age and are in need of support and help.
Let me tell you what has happened to my husband and myself since last August. Some of you will recall I posted that my husband had suffered a TIA and a bout of pneumonia and was taken, by ambulance, to hospital and that my care giving days appeared to be over. This was August 14th ……….. he was kept in hospital, on an acute care unit for 6 days until they had the pneumonia under control and had determined the TIA was not going to be fatal. From the acute care unit he was transferred to a holding unit where they hold folks who have been assessed as nursing home ready until there is a nursing home bed available. He stayed in this unit for another 5 weeks – much of the time tied into a wheelchair with a posey as there wasn’t sufficient staffing in the hospital to either spend time with him or keep him occupied …… although I went up to the hospital every day, 7 days a week, 10 hours a day and fed him, showered him, exercised him, took him outside for fresh air, shaved him etc.
Finally a bed became available in a lovely brand new facility – the place was so new …….he was the first admission on the main floor. He had a private room overlooking the garden area with private toilet and shower; the meals were exceptional, all his laundry was done and the staff kind and caring but ……… and this is a BIG BUT ………. A terrible mistake had been made by those assessing him – he really didn’t need nursing home care but what was needed was in home help for myself to look after him …….. I hadn’t had one moment of respite in 6 years and we had actually become a “family in crisis” ……. I was totally burnt out thus willingly allowed him to be placed in the nursing home. He stayed in the nursing home for 5 weeks and each day when I went to spend time with him I would arrive to find him either walking around wringing his hands looking into every face that approached him ….. I think he was looking for me (sad) or I would find him laying on his bed with his eyes shut but tears streaming down his cheeks. I took him out of the nursing home at least three times a week and each time we returned back to the nursing home he asked me where we were and I’d explain we were at his apartment and then I’d have to *sneak* away while he was distracted by staff otherwise there would be more tears and begging to go home but he was wanting to go home to a place we had lived many years ago ……. Obviously he’d forgotten where we live now.
Anyway, the long and the short of it was that after 5 weeks in the nursing home I could no longer stand the pain I was in and could no longer stand watching my husband be so terribly unhappy in this situation and I made the decision to take him out of the nursing home and bring him back home permanently. I did this on November 14th – just one day before my husband’s 72nd birthday and this is a decision I’ll never regret ……. No matter how tired I get down the road ‘cuz I look in his eyes and see there is no longer that dreadful pain and hurting that was there while he was in the nursing home. He is happy to be home although very confused most of the time.
I knew I was putting myself back into the same situation of having no respite, no help, no nothing, but I just could not do this to my husband of 48 years ……. I knew in my heart of hearts that he would never let me be so desperately unhappy if the shoes were on the other feet.
Now he is home, the Government Health Care promised me some in-home help and my husband is back on a waiting list for Adult Day Program ……. None of this has come to fruition to date. I’m doing it all my myself once again but at least I’m not in that dreadful painful state of sadness nor is my husband, that we were in for the 6 weeks he was in the hospital and then the 5 weeks he was in the nursing home.
The Government Health Care case manager came up with help in the form of l hour per day (for which I pay $57.77) but it's only actually 50 minutes of help because the caregiver is allowed 10 minutes travelling time or some such ridiculous thing. During this 1 hour time frame (or actually the 50 minutes) the care or help that would/could be provided would be to give my husband his morning shower (he has to be showered every morning as he is totally incontinent and soaking wet, from stem to gudgeon, every morning thus the need for every morning showering) and dressing him for the day. I can have this l hour a day help on any 4 out of the 7 days in a week ……. OR ……. Alternatively I could take all 4 hours, all at once, once a week. This is what our health care bureaucrats deem is helping the care giver …….. what a bloody joke !!
I thought all this through and decided that I’d hire a maid service to come in and clean our home as a ‘guilty pleasure’ for myself as this would give me some form of respite in that I no longer have to worry about dust-bunnies and floors that need washing and this was one less thing on my plate to deal with. So far this arrangement is working out very well and I feel a sense of relief and I’m not feeling so rushed to get everything done every week. Of course the service doesn’t clean as I would but I’ve ‘talked’ to myself and said “self, this is a good thing and it really doesn’t matter that they don’t clean the same as you would ….. at least it's cleaned and you haven’t had to do it” ……… LoL !!!!!!! So my dear stateside fellow care givers ……… make the most of the help you are offered/given ‘cuz is sure aint offered nor given north of the 49th !
Barbra, what a story. Is there no possibility of having the amount of help that you're given reviewed?
It does sound like he got excellent care as long as he was in the hospital or nh. I admire you for making the hard decision to bring him home. They are telling me here that 6 weeks are necessary for adjustment (in this case it's about day care, I don't know if the same applies to an nh).
In Holland the system is also completely different from in the States, and I'm impressed by the number of options everyone stateside seems to have, although unless their LO's are veterans or they have good insurance they seem to be paying for everything themselves.
I don't know yet what my "own contribution" will be to help pay for the two days of day care that DH is now in. It is a godsend, and was quite easy to apply for and get. I had my choice of any facility, and in hindsight perhaps did not do enough research or choose the best, location-wise. I was probably too willing to take some advice from a care consultant who didn't know as much as I though, and I probably was too eager to go for the one with no waiting list. The "contribution" is related to taxable income (not to the choice of facility) so I am confident it will be a fair amount, not too much for me to pay. And whatever amount it is, it is worth it.
Well, Bar-bra, I am sorry you had to go through all of that but don't think that you "up north" are being shortchanged...or at least it doesn't seem so to me. When I brought my husband home from his AD facility when he was completely bed bound there were no services available to me that were free or at any reduced rates. I had to pay full rates for any help that I hired. Before that, I paid for his day care services and was happy to do that just to get some free time. When I had to put him into a facility I was totally responsible for his monthly fee or approximately $7000/month....so Jeanette is correct...unless you are a veteran or living on practically no income, you are on your own here. I am not complaining....I feel fortunate that we had the resources, but I suppose the grass aalways seems greener...
I hope everything works out for you and your husband.
Oh Bar-bra thank you for sharing. So often I've felt the 'system' has failed us..and it did from the very beginning. It took 5 years to get a diagnosis..and even with diagnosis...there were so many MANY issues that we needed professional HELP with that were dismissed because DH was able to cover so well that in the dr. office.. what anyone SAW, was a lucid, perfectly rational healthy active man. If not for the fact that there are similar experiences among many of us.. I think I would have lost my mind completely. I fear the emotional consequences of placing DH. I fear the very things you described and if he ever cried, it would absolutely break my heart. I hired a home agency (private pay) for 2 days a week.. it didn't work out but DH really liked her. The cost for that was just over 1000/mo. A housekeeper would have been able to accomplish the same things. DH would possibly like to have ANYONE around to break the monotony. I think I'd take the 4 hours once a week rather than no more than a possible 45 min. once a day. I think we all flounder with these issues of best care possible vs what we can afford or what is 'allowed'.. If one has enough resources, its not so complicated. The laywer I attempted to get advice from.. shared that when his dad got Alz. they simply BOUGHT a small house.. hired round the clock care and had their own little 'nursing home'. Well glory beeee..
Bar-bra sorry for your unhappiness about lack of support. As far as I know here in the states you also pay for care-sometimes at a reduced or sliding care-but you do pay.
Bar-bra, I think we both live in Vancouver, B.C., and I ditto your assessment of shocking lack of support here. Do you think that somehwere down the line when we have more time and energy we could interest a local TV station in the story? It's the only thing I haven't tried! In the meantime, we just have to soldier on.
My church recently started a Mitzvah group to help parishioners on a volunteer basis. they immediately called me to see if I need help. Someone to sit with hime while I go to my support group maybe? i wouldn't take too much advantage, and I'd rather have a man, but whatever I can get. Maybe you could check out some volunteer organizations to see if companionship for him would be available. Faith based charities are often your best bet.
Barbra, I am going through the ALZ struggle in Ontario and agree with you regarding our great universal health care in Canada. Since my wife (56 years old) was diagnosed and became completely dependant on me I have had to leave my job and take reduced pension. I'm only 55 years old. The system that we deal with in Ontario ia called CCAC and they have complete control over all available assistance. (including assesment and placement into LTC). Beside the fact that we are eating up our retierment savings to stay afloat I don't ever get a break unless one of my sons comes to watch my wife. CCAC have offered 4 hours per week at $20.00 per/hr but can't guarentee the same PSW each week, this is like introducing a stranger weekly to assist with the most private buisness a human has (bathing and toileting). I'm sure that these so called case workers make a very good living on our tax dollars but the people who need the assistance go completely overlooked. I have resolved to kiss the system goodby and do it on my own.
Mary75, Bar-Bra - I'm in central BC and just trying to get the health professional to believe you have a problem is like pulling teeth. But then do we really want a diagnosis because Blue Cross won't cover the meds. I'm abit more fortunate in that I have DVA involved and he is on their VIP program that covers all his meds and other health needs but only if it stems from PTSD as soon as Dementia comes in the picture I loose any medical help that comes from it.
I wonder if it's financially prudent to divorce and see what is offered? No elder attorney north of Hope to ask these questions to.
THANKS to all for acknowledging my plight and sharing your own situations ……. my heart breaks for all of us and yet I’m so very proud of each and every one of us, who provide care giving to our loved ones, that we are willing and able to do so.
I don’t want anyone to think I’m not willing to pay my own way, for I am ……. the problem is that the system will just not give care givers any reasonable amount of help no matter who is paying the bill. Surely you have to agree that one hour (actually 50 minutes) a day cannot really be considered respite …….. what can one do in 50 minutes?? …….. I guess I could drive to the grocery store and back in 50 minutes but couldn’t possibly go in, pick up a carton of milk, stand in line to pay and get back home in that time ……. this is what I’m getting at is that the bureaucrats just don’t seem to get it.
No, JeanetteB ……. There is no review or increase in time allotment – it is what it is – it's a take it or leave it situation, unfortunately. Yes, you are right there certainly is a *getting used to* time issue involved but watching my husband, when he was in the nursing home, deteriorate more and more each day because he was so sad – it was like watching him give up on living and was just too painful to watch and I knew in my heart it was just plain wrong and he needed to be home, sleeping in his own bed, eating at his own table. He didn’t medically need the nursing home facility it was just that he met the criteria for admission and because I was totally exhausted and weakened by 6 years of 24/7/365 care giving I agreed to his admission.
Yes Judy, I agree the 4 hours at one time may well be the best alternative for me to take.
You’re right Mary 75 ……. ‘soldier on’ is exactly what we have to do. True, we are both on the Coast and dealing with the same bureaucrats I’m not sure even doing the TV thing would be to any advantage ……. what we really need is an Ombudsman who could take up the cause – or maybe that fellow called “Olson on your side” – I think he does some sort of investigative type radio/TV work. The only problem is that even if we were to raise the issue, citing our own situations, it would most probably only be a one news cast issue and then become forgotten.
Chris, your church group sounds like an excellent and very charitable idea and one I could embrace if it were not for the fact that we moved here with my husband already in the firm grip of Alzheimer’s so there hasn’t been any opportunity to even meet people let alone become members of any organization/church. I’ve barely been able to meet the immediate neighbors as, for the most part, they are healthy and active and not interested in burdening themselves with a couple who aren’t just quite whole.
Selwynfarmer ……. I’ve been following your journey on the Canadian Alzheimer’s Board. I did see that you’ve all but given up on getting any outside help …….. what a sad situation. You are right each week a different worker comes it surely is a great problem in that our loved ones are just not able to accept the lack of continuity. Not only are they being subjected to their very most personal care being looked after by virtual strangers but then to ask them to accept a different person each time is just, to my way of thinking, an unconscionable request to be made of anyone let alone someone who has difficulty even understanding any longer.
Amber …….. they don’t believe because they refuse to *see* and they can’t *see* because they don’t spend enough time evaluating the patient. I couldn’t get Blue Cross for my husband when we moved to BC because he came here with Alzheimer’s and that is classified as a *pre-existing* condition and thus not coverable. You can file for *involuntary separation* if and when your spouse is placed in a nursing home or care facility. From what I understand filing for *involuntary separation* causes the government to then look at you as two separate individuals as far as income is concerned rather than lumping the two of you together. This apparently lessens the costs involved and apparently can give you a small OAS increase.
You can call Service Canada, 1 800 622-6232 – Monday to Friday, 8 am to 8 pm your time. They will send you out the forms you’ll need to fill out.
FayeBay ……. How sad ……. your poor husband trying to deal with that situation. I applaud you for taking control and not allowing it to continue. But, how disgusting is it that we have to monitor people who we are supposed to feel secure having in our homes to help our loved ones physically and medically. These people are supposed to come fully trained, bonded, insured and completely trust worthy ………. Obviously not eh !!
Now to leave you all with a somewhat helpful, if not odd, tip (smile) …….. my husband became unable to sit on our already high toilet so I bought a raised toilet seat to make it even higher but that didn’t work well because if he sat too far back, in order to urinate into the toilet, his behind would be on the seat itself and then if he had a bowel movement it would be all over the seat ……. If he sat forward enough to allow the BM to go where it was supposed to go then he urinated all over the floor in front of the toilet and most often me, as I was standing there helping him. I then found a 3” toilet riser – this one you install on the porcelain bowl itself and then you place your regular toilet seat on top of it and it's all held together with these very long (about 8”) bolts. This riser works perfectly and is just like using a regular toilet except it's higher.
Bar-bra - yes, I have that one too - and it can be ordered thru Amazon (go thru Joan's site and get her a little commission). I like it very much for my own self, and my husband doesn't mind it; it seems to help him sit down more quickly, crucial in our case.
That site looks worth looking at for other items too.
I have that one also. ordered one online, got the other from the VA. I have bad knees, and the toilet seats are great for that, and DH has a bad back also, so he can sit, and get up without trouble. I recommend them.
Bar-bra, we do have Ombudsman for Seniors here in B.C. You can Google for information and forms. They want to know what steps we've taken and where the system failed us. I've documented everything and taken photos and plan to send them to the Ombudsman when the time is right, also to the College of Registered Nurses of B.C. The single most important factor in getting adequate care for my husband was by getting in touch with someone high in authority who cared. And that was by luck and the grace of God. (The illustrator for my husband's forthcoming book is the friend of such a person and passed the word along; I hadn't even know there was a connection there.) So hang in there, Bar-Bra. When you've done everything you can, and you're least expecting it, a solution will appear that will knock your sox off with the wonder of it.