I have finally made the decision to advise our regional health authority that I want to change my choice of long term care facilities for my husband ( I had initially chosen a facility with a longer wait time even though it was my 2nd choice, first choice had a wait time that was too quick for me) after hubbys short stint in hospital it now seems so difficult to find a new routine ... He sleeps in living room in hospital bed and I sleep upstairs so in other words I am not sleeping very well... Am not comfortable going to bed unless he's asleep and lately he isn't going to bed as well as he did previously... His care is becoming ever much more time consuming that most days I find I have only had one cup of coffee by the time supper rolls around or breakfast might consist of a couple of chocolates... He is non verbal mostly but has now begun this ungodly moaning and grinding of his teeth, both awake and asleep and it's terribly unnerving... I am absolutely terrified of something medical coming up while he's at home that I literally feel sick to my stomach most of the time... After spending my respite afternoon yesterday in tears at how it feels like things are imploding, I decided it's time to make the change of care home choice and am hoping there isn't too long of a wait as its time to save myself and turn the care over to the professionals... Just dog tired of monitoring fluids for bowel movements all the while watching for choking with his swallowing issues, the increased workload, isolation and unhappiness... Hopefully we survive til the change...-
It sounds like things have changed, so you have to change plans, too. You are doing the right thing. I will be keeping my fingers crossed that the process works smoothly for you.
Yes, it sounds like it is time for a higher level of care, and sooner rather than later. Can you get some home care aides in to help you while you wait for placement? Is there any chance the doctor could hospitalize him for medication management (the moaning, etc.)...and then you just say you can't bring him home? If you are not eating and sleeping...and if you're having to monitor him for choking issues...it doesn't sound like a safe situation for either of you. If something medical comes up while he's home (choking, a fall, whatever), all you have to do is call the ambulance. Don't drive yourself crazy worrying about what to do. Just hit 911, or whatever the emergency number is in Canada.
Can you place him in the first available facility, and then transfer him later to the one you want?
I would make it clear his needs are beyond your care abilities. If this doesn't happen soon, this disease may take you before him and we don't want that.
I don't know which province you live in but on Ontario, and I suspect all the others, there is an emergency placement and you sound like it is indeed that. Call your case manager and ask for him to be placed ASAP because of your own health issues as well as his. A caregiver I know was having problems caring for he hubby and he was in care in just a week or two. It sounds like you have done as much as you possibly can for him so really push them. Your Doctor can also help by calling them as well.
In Ontario they were looking for me saying I was in crisis and couldn't do it anymore. That made it an emergency placement as Jazzy said. She was sure she could find somewhere temporary within 30 days or so from that point.
There comes a point where some of our spouses needs move beyond what we can provide. It's a horribly difficult thing to face.
I'm sorry Tanis, but this is going to get harder and put both of you more at risk. Sooner or later you must face this. He will be in the hands of as much professional help as we can get. They operate 24/7. You can't.
Thanks all for your words of encouragement and support...hubby had a nice quiet uneventful day yesterday and went promptly to sleep at 930 last night... I followed shortly after and got up at 830... Got hubby ready for day and we've just finished a proper lunch... French Canadian pea soup and salmon sandwiches... Feeling much better today than over the last few... Officially made the switch of care homes this morning and had a long conversation with case manager and estimated wait is perhaps a month but the call could come at anytime which of course on one hand can't come soon enough and any amount of time would be too soon on the other hand... While he is getting to the point where professional care is more where he is headed, I think with the decision made, I see a light on the horizon and have got a few more miles in my tank... I always have the option to go for urgent placement if it gets too much and will keep it in mind if things go south
Well that was quick....got a call from healthcare case manager informing me that my first choice of care home for hubby now has his file and he has been shortlisted which basically means the call could come any time...in a matter of days, weeks maybe a month or a little longer...and of course right on cue, hubby has basically been good as gold in the 3 days since I made the call which makes it so hard not to change my mind and say i can hold on awhile longer...very frustrating...needless to say every time the phone rings I get a sick feeling in the pit of my stomach until I see the number and figure out it's not the care home...the old rock and a hard place again...on one hand the phone call represents a lifeline for me, on the other hand however the phone call represents stepping into an abyss...I hope to keep the resolve not to change my mind by telling myself he is only going to get worse, never better, so it's now or some undetermined time down the road but it is an eventuality....
29scorpio, When I got the call to bring my husband in within 48 hours, I asked if I could put off admission for a few months and was told I could. Then a friend pointed out to me that I was delaying this because of my own feelings about it and that I would have exactly the same feelings a few months later but would have more time to stew about it. I realized her logic and went ahead. I don't know if that would be the right decision for you but it was for me. The only other suggestion I have for you is to go back and read your post at the beginning of this thread. It sounds like you are dealing with a lot.
Sometimes when I am with Kevan I think maybe I could bring him home but then I realize it would be for me, for my feelings not for what is the best care for him. My son-in-law refused a room for his Mom, in a residence that he was not comfortable with and she was taken off the list for three months then put at the bottom. Now she really needs that kind of care bit he has to start all over and wait. I think, and this is just my thoughts, that we love our partners and don't want to loose them from our homes and we may not always see what is not only best for them or for us. It has taken me two and a half years to realize this fact. I would cry my heart out when I drove away each time I left there but now it's not as bad. I miss him terribly and would love to bring him home but for me not him. He is settling down and often can't remember what he was upset about so he us less volatile. We can visit as often as we wish and can still have the say it what care they get but we can sleep better and eat better. It's a difficult decision but take care of you as well. Hugs
29scorpio I am just a short way behind you and know exactly how you feel. Taking Lisa to first repute stay on the 17th and have been loosing sleep over the process of telling her and taking her. I know within the next few months will,have to place her this has given me a light at the end of the tunnel and i believe the strength to keep going. You (we) have been given great advice here but still as I have said before knowing what has to be done is one thing and doing it is another.
I too hope I can keep my resolve as some days she seems great and I feel it is not time yet but then I realize yes it is. Postponing is just putting off the inevitable and what for it is only going to get worse and going to be hard whenever it happens. It means we are entering a different phase I know Lisa will be cared for and know that I will always be there for her but it will not be 24/7 for me.
There is also the fear of what am I going to do? I say the light at the end of the tunnel but what am I going to see in that light? Right now I just think of sitting here and doing nothing. Sigh!
When you have doubts or having good days after horrible ones, come here and read your post to remind you of all that has happened. I think we all tend to forget the crappy days when they have good days.
29scorpio, I well remember being where you are now and the emotional toll it takes. On March 1, 2014, I drove my DH away from our family home of 25 years and took him to placement. I knew he would never again set foot in the house he loved so much and where we had raised our three children. I'm not sure how much he could comprehend that day but I told him he was going for a 'few weeks' because the doctor said I needed a break. I am in British Columbia and opted first for more expensive private care because the public system did not consider him a priority until after he was hospitalized for three months for his agitated and aggressive behaviour.
Even though I was an emotional wreck that day, I knew it was the right decision for everyone, and while I hated coming back to an empty house I had the best sleep that night in a long time. I wish you strength, courage and peace for this most difficult decision as well as for the rest of the journey.
Thank you all for your words of encouragement...it's so hard emotionally to be dreading the call and at the same time looking forward to the call ... like Rona I have much fear of a life alone...hubby and I have been together since I was only 19...we drove long haul trucking together for awhile and then started a business together which we ran for 16 years...we have spent so much 24/7 time together I am really at a loss to comprehend what life will be like without him by my side...I feel we have spent 3 lifetimes worth of time together ...it will be such a change without him...i'm sure my level of comprehension of what it will be like is waaayyy off the mark of what it will be but I cannot change the course of things coming so I guess I best try to get used to it as best as possible...Gonna be rough I'm sure...
I married my wife when I was also 19. You stay strong and navigate through this horrible experience. Listen to what you said "...and at the same time looking forward to the call..."
This is the road and when you settle down just a bit after the first months, you will be able to sleep knowing he is safe. As the months progress he will increasingly be getting care you simply wouldn't be able to provide. This is not an endurance test of you. It is one of life's worst experiences centered around the best care for him.
You're going to feel very powerful guilt. Going home is shocking. Visiting him is shocking. But he then has professional care plus an advocate and a life partner who has a few cycles in her battery again to keep going with. In time it gets easier and we get more used to it. Stay strong.
I think many of us married young basically going from parents home to married life. I was 18. I have no idea what it is like to live alone, have no one to make decisions about except myself.
You can do it. You can do it because you need to for you to not become a victim of this horrible disease too.
I think we all have a fear of living alone. It just come with everything else that this disease does to our relationship and home. You are being given some great information. Each of us have really said the same thing just worded it differently. No one has said it's easy to place your loved one and no one said "Whoop ee" he or she is gone free at last. To me it was the hardest thing I have ever done as well. If you become ill trying to care for him on your own, who will take care if him and you as well? We are their advocates. They need us to take care of us so we can be there for them. Both you and Rona are at very difficult and heartbreaking stages. Be strong, love yourself just a little. You can do this. Then have a few good cries. We all do!!
Once again, it's great to have input and support from those who are walking the same path as me or have already forged ahead on that path...the first year or so I just breezed right through thinking oh this isn't so bad...the last year and a half...not so much...many tears, frustration and general sadness, but thanks to all of you who have already traveled this road, there is a glimmer of hope that there will be something to salvage in the "after" Today is hubby's 65th birthday and he didn't seem to know what we were talking about when we wished him happy birthday sadly...his decline has been relentless...but at least he ate some of his cake!!!
Happy Birthday to your hubby. So sad, only 65. Seems like so many of us are in our 60's.
Where did all our retirement years go??? Remember the last couple of birthdays my husband had..similar experience.
Yes, he ate his cake. We do learn to appreciate the small joys.
From someone who has traveled to the other side, hold on to hope. You will get through this heartbreaking journey.
There is no denying how difficult this decision and move will be for you. But, know you are doing what is in the best interest for your husband . Feeling the pain.
Well I almost had a heart attack this week...not literally lol...tuesday my phone rang and it showed on the tv that it was the nursing home calling...yikes!!! The social worker wanted to come and meet hubby...would tomorrow be OK? Um yes I guess it will be...No one had every mentioned the home coming to visit me in all our discussions with either my case manager or on previous visits to the nursing home...Well the social worker and head medical supervisor came to visit yesterday, meet hubby, get a general handle on his care needs, medications etc...they were both well versed in caring for people with cognitive impairments and had a calm, caring demeanor about them both which actually made for a pleasant visit...No there was no room available at this time, but barring an urgent placement from hospital, hubby will be first on the list so I am thinking the time frame isn't going to be exceedingly long...it's terribly sad when one stops to think that in order for hubby to get there, another family will have to suffer a loss first...not really liking how that feels...
Sometimes beds come open for other reasons, 29scorpio. It isn't always because the resident died. Think about all the families who retire to the South, and get their loved one discharged from, let's say, the NY nursing home, and take them down to Florida with them to a facility there.
29scorpio, another way of looking at a bed coming open is that someone has been released from a nightmare illness -- I know that many of us here accepted the passing of our spouses as blessings -- sad, to be sure, but blessings.