Good Morning: I am a new member and have so many unanswered questions. I am struggling with making a decision to put my husband in long term care. I read other peoples posts and feel so guilty that I am even considering this but I am completely wore out and don't know what to do.
hello Velvet and welcome!f sorry you have these unanswered questions but this site has the absolute best answers by folks who are in the trenches and many years of continuing caregiving experiences. if you go thru the past topics of pages there are many topics to read and learn from. if you have specific questions start a new post and topic and you will get some replies from the members. we have found there is no need to feel guilt even if its part of the placement process. many have health issues of their own and cant handle the stress of daily caregiving for long. manyhere have just placed their spouses too. remember each Alzheimer victim and their caregivers have specific challenges that make differences. divvi
Welcome Velvet....sorry you have to be here. I'm also dealing with placement for my hubby. I know for my health, mentally and physically as well as emotionally and spiritually, it is time....like you I am really worn out. I think, for me, there is the guilt issue in that "this is how he will end his life and could I've done more and went longer." My answer is "No" I have done my best and I can't let this disease take two victims.
Welcome Velvet. I'm sorry you have to be here too. I can tell you that this site has been an incredible source of information and support for me. My husband is not near placement level yet but lots of spouses are dealing with that very issue. Good luck with your decision.
Velvet welcome. If you go in the search box, you can find any subject and all the discussions to do with placement or anything else you need to know. You have come to the best place on this universe for understanding and non judgemental support for us in this tough situation.
Thank you for all your input especially what Amber had to say. I am having a very bad day. Live in a small town in northern Alberta, Canada and they have no support here at all. I could not get respite because I worked and left him alone. I made sure he was fed in the morning and had out what he needed and came home at lunch and fed him and had him prepped for the afternoon. I have been off of work since the middle of July on a stress leave more from work then him but he has gone down hill so fast in the last two months I can't see even thinking of going back to work even half time. This is just causing me more stress about income but I am tough and will figure it out. I turn 65 in December so my pension will start in January. So until then I will find a way. I am so glad that I found this site as the Canadian one is not that great for chatting and right now that is what I need. Thanks again for all of your comments I finally feel like I am not alone.
Hey Velvet, another Canadian here....Cariboo BC...there are a bunch more that will come along. I also left work this last March to look after him, doctor gave me a stress leave. Is there a town close to you that you can get in touch with their community nurse. They're the ones that will assess your hubby and help you getting the support you need. Also you should be looking at getting him on a list for LTC because of the wait list the nurse(s) will help you with this too.
Have you got a Representation Agreement Section 9 signed by hubby and of course POA, wills up to date that sort of stuff makes everything much easier to deal with when he not longer is able to understand and sign documents.
The members that have place their spouses will tell you that If you think he needs to go into LTC then he should of gone 6 months earlier. Don't beat yourself up, you have traveled a long hard road and now it's time to rest.
Hello Amber: Athabasca, AB. I have been working with the Health Unit and they are going to put his name on a list. the nurse said that she would probably come over for a home visit next week. I have inquired with the Health Unit for mental health for me but when our Government did all its cuts the mental health care workers from all the small towns were cut. I am 1 1/2 hrs out of Edmonton but there is no way that I can drive there for help. We had a personal directive done when he could still understand and he could initial and I have a detailed Dr.s report on him. I checked with the Guardianship office and they told me that this is all I need. I went to see a lawyer to see about power of attorney but they wanted $5000.00 and that is not in my budget. So far the paperwork that I do have has been working for me.
Welcome Velvet--sorry you have a need to join our "club" but just know we are here day and night and believe me there is NOTHING we have not heard and talked about,so feel free to vent!!!
$5000 for POA, they are trying to rip you off. Try a notary public....that's what I used and it wasn't very expense. If you decide you need a POA make sure it includes all his assets so you don't have trouble with selling any of his/your property if you need to.
Hi Velvet. Welcome to the best website in the entire world for spouses of persons with dementia. Here you will get all the emotional support you could ever ask for - a really great community of friends from around the world. I'm also a Canadian, living in a small community in an English area of rural Quebec. My dH is not too far from LTC. He just had his first few days of respite last week, but I realize that at some point I am not going to be able to look after him at home anymore, and I will have to place him. Keep pressing for the health services you need. If the nurse doesn't come this week, call again to get her to come the following week. Here, to get the services we need, we talk to the social worker - she has a really good handle on what is available for us (I'm not a senior yet so that complicates things a bit since some of the services are only available to seniors). I wish you all the best. We are here to help you on this journey.
Velvet, How sad that you need to find your way to this site. That said, it is the best place you will ever ever find for support, insight, suggestions and tips to help you through this difficult time. LTC is a big decision, one I didn't have to make though I had investigated it just in case I would need it. The thing is, you also have to take care of yourself and if you are worn out, your body is telling you something. Others here who have faced and made this decision will be of tremendous support to you. Nikki is one member who will surely give you some valuable insight for sure as she has been through this and has faced many health issues herself. She is very wise for one so young. Be well and take care. By the way, the names that have a * and a date are those of us who have lost our spouse and when that happened.
Welcome, Velvet. If you feel its time for placement, then you should not feel guilty. If you feel it is time, then it is time. Period. I placed my wife 5 weeks ago in an assisted living facility. I felt tremendous sadness ... but no guilt because I knew it was time. Sadness, yes ... but no guilt. As caregivers, we must do what we must do. This is the single best site on the web for spouse caregivers, but you may find something helpful in some of my published articles as well on my website, www.allansvann@blogspot.com. Good luck with whatever decision you make. And remember, there is no such thing as a wrong decision. Whatever you decide to do is the correct decision.
Hi Velvet Another Canadian and former Albertan from Edmonton now in Ontario. I had to bring him here to get him diagnosed. Welcome. I hope you can get someone to help you with this difficulty. My DH has been in LTC for a month now and it was the best thing for him and for me.
There is supposed to be a Health Nurse coming to visit this week and get him on a waiting list. I hope he can get into the first place that I put on the list. It requires a move of about 125 km for me but it sure would be worth it. I visited the place and it looks so calming there. The nurses were telling me that it might not take to long as there is a much shorter list for men then women. That really surprised me. I have not brought up the subject to him as yet - I know him well and my life what is left of it would be a living hell.
Another Canadian, here. Born in Calgary and have lived in Edmonton, now in Vancouver. Welcome to the site. May all the bumps on this Alzheimer's road be small ones.
I'm not there yet, but you can't get better advice. I don't think any of us should feel guilt. I think in our hearts we know when it's time to place our lo's in long term care. Take care, Bonnie
Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". You did not mention your husband's age, but if he was diagnosed under the age of 65, there are also EOAD ( Early Onset, now called Young Onset) topic on that same side.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
I, too, am a new member and also Canadian (from Vancouver). I found out about this wonderful site from another Alzheimer's wife a few months ago but, other than sending a brief email message to Joan to thank her for this service, I have not commented. After reading your post about whether to place your husband, I wanted to pass along a helpful comment that a woman who is much further down the road than I am told me last year. I was asking her how she knew when it was time to place her husband and she replied "it's time when you don't want to do it any longer - it's not whether you can, it's do you want to". I suppose this could sound extremely selfish to some, but I'm coming to find out that we caregivers must also save ourselves.
My husband and I are both 64 - he was only officially diagnosed in September 2012, but had symptoms for at least a year prior to that. Of course with hindsight I can see that there were incidents several years ago but none of us was connecting the dots. His condition is deteriorating quite rapidly - I think even his neurologist has been surprised at the pace. At a visit about six weeks ago, he told me that where my husband is now is where he would expect to see someone who was 5 to 7 years in, not just a couple. His medication has recently been changed (so happy not to have the daily patch) but whether there will be any slowing of the progression is too early to tell. I am learning with this wretched disease that there are far more questions than answers.
I wish you well with your decision - not sure when this will arise for me, although I have already paid a deposit to a facility just to be on their radar when the time does come.
Welcome to you too, nbgirl! You are absolutely right, we caregivers must also save ourselves. Whether that means we can no longer care for our LO's because we physically can't, or just don't want to anymore, really doesn't make any difference. If we carry on longer than we want or than we can, we become victims too. As I posted above, my dH is getting close to being placed. I've already crossed one line in the sand (incontinence) and still look after him at home. He knows that I am getting more stressed as time goes on. I decided that I will place him before I break. I just need to figure out what my breaking point will be.
Thanks bqd - I couldn't agree more. You mention crossing the line in the sand - I've always said that there were three deal breakers for me - violence or aggressiveness, wandering and incontinence and, to date, none of these has happened but I'm sure it's only a matter of time. I hope you find satisfactory placement as it sounds like it may be close for you. Take care.
Welcome Velvet, You will find this website to be a God send. I placed my husband in August. He has been there about 2 months and I could not agree more when they say place them when you do not want to do it anymore. Sometimes when I visit that tape in my head will say, "He does not seem so bad, you could have kept him home. " But then once he starts talking and telling me about an affair going on between the residents and the fact that he still cannot find the toilet and is peeing in waste baskets and keeps asking me where I live, I know I did the right thing. I did not want to do it anymore. I can say that our relationship is 95% better than it was when he was at home because I can go visit and be there for him in a way that I could not when he was home. I was way too distracted with keeping the house running and all that goes along with that. It is not an easy decision and the first few weeks are the hardest but I can say that they do adjust. My husband seems to like the structure and is starting to participate in the morning activities--something I thought he would never do.
Just wanted to say that yesterday was a really good day. No incidents and a very peaceful day which very seldom happens. It was so good that I took him out for supper. He actually enjoyed himself and ate all of his food. Had a good sleep which seldom happens so I feel pretty good today. Have acupuncture today so have to leave him for an hour and a half. I always take a good book so I have some quiet reading time. All in all yesterday was really good.
That's great to hear, Velvet. Good days can give you such a boost! I really look forward to the respite I get two days a week when my husband goes to a group for Early Onset patients.
Velvet, welcome, something is horribly wrong with that $5000 number. Five hundred would be a high rate for both POA's (you must have both) and a reasonably straightforward will with almost any lawyer you find in the phonebook. Something is wrong there.
I needed my health POA to place my wife into a nursing home. I need it to change bills and credit cards in her name. I need her financial POA to make changes to her RSP (401K) and to file for the disability tax credit and the CPP disability pension. I need it if she goes to emergency at the hospital. If you don't have them this can become a royal pain at the worst time. Phone another lawyer please. This is simple stuff.
Are you aware of the disability tax credit, income splitting potentials, and the ability to deduct all your nursing home bills from your income tax (as tax credits)? Each of these can have an impact of thousands of dollars a year to the average household. You can also tranfer unused portions between you. Let me know if you require more information.
Welcome to nbgirl too. You can get your husband full CPP with the CPP disability claim and you can claim that regardless of whether he's on early reduced CPP now or not. My wife gets $1180 a month from the time she was 56 and they backdate earlier if they approve the claim. I can get you details of how to go about this if desired.
Wolf - The ability to deduct all your nursing home bills from your income tax - more information...yes please. I have the bills for respite care are these tax deductible too? His nursing home bills are being paid by his CPP, OAS and GIS income...are these tax deductible? Thank you for the info.
Wolf, thanks for that info on the CPP benefits. My husband does get the early reduced monthly benefit but I have avoided applying for CPP disability because I did not want it to impact the long-term disability payments that he gets from his former firm. He will get this until he is 65 next September, but then I guess we could apply for the CPP disability. The insurance company is vulture-like in their clawback of any money received from other sources as it reduces their payment. However, it might be beneficial if CPP did backdate the claim, as you say, and at that time the insurance company would be out of the picture anyway. So much to think about with financial matters, but I appreciate any tips you can pass on.
nbgirl, just remember if the CPP back dates the claim and pays for that time period the insurance company will demand repayment of the amount of money the paid during that timeframe.
Note: all comments are general. I will provide exact specifications. forms, and tax return lines if anything said sounds like it applies.
Amber.
When someone is in a nursing home or equivelant they can deduct certain expenses. Same thing for home care. When that person has Alzheimer's the whole cost is deductable. The nursing home is required by tax law to send you a letter each year telling you how much of the care was eligible. That number will be extremely close to the 12 bills they charged you because dementia patients in nursing homes just do.
Don't forget there are all kinds of homes. Going to a retirement home is when you use that list of eligible things etc or in home care.
You fill the amount in that letter onto your tax credits. In my case that number was just over $26,000 of which you get the credit rate.
When you say the bills are paid by his CPP, OAS, and GIS - you have to be clear.
Normally CPP, OAS, and GIS are income paid to the individual. Where funds come from that he pays his bills with is nobody's business. If you mean because those funds come from the governement do they not count in some way? That answer is no. You are eligible.
So if these are just paid into his account near the end of each month like any other citizen then he gets to claim the whole deduction.
In either case you can claim the roughly $7,000 tax deduction once you have that form signed by a physician and filed with revenue canada.
Don't worry about getting confused. I won't let you. If necessary we'll find a way to end up on the phone and we can resolve all this for you in understandable ways.
These types of discussions tend to unravel in writing is why I'm saying that. But don't give up here. We'll get all this understood.
Jazzy, that's hard to answer. I'm not sure what a tax accountant would charge but if going through all this is too confusing then I would talk to one and explain what I'm trying to get done and get a price estimate.
Issues that can affect tax savings are proper splitting (CPP and company pension rules are different for splitting) if such a thing lowers household tax.
The disability tax credit which is just a physician filling out the form I provided a link to above to Amber. You can split that tax credit between you too.
The other is getting proper expenses claimed which definitely applies if they are in a nursing home.
And finally does it make sense to apply for the CPP disability which can be backdated.
There is also the insurance wrinkle. If an insurance company is involved where I'm about to answer nbgirl, as LFL said, you have to be careful about the particulars of that policy.
If you like, you and I could size some of this offline (the numbers dictate the advantage/disadvantage).
I'm not looking to meet people. As I said to Amber, financial discussions on-line don't work. They get twisted up usually.
That sounds like the right way to go. Wait until the insurance company's relationship with you is ended. Wait six months. Then apply for CPP disability. I see Revenue Canada has moved that form where I did have a link. I can find it.
To be clear. The CPP disability application is an application for full CPP benefits because of the disabling aspect of the disease. If CPP accepts it they will pay those benefits from the time of the diagnosis at least.
If our spouse took the early CPP then we will not only start getting full pension but also the difference from the date of the diagnosis.
In my case of it's own accord CPP went back and decided that my wife was disabled before that date and paid us another lump sum.
It's a multi page form that should be filled out by the physician who made the diagnosis and this should be discussed with your doctor who may not have seen this form before.
If you are approved, waiting still hinges on the date of diagnosis on that form - not the date you applied.
Wolf thank you so much for the info. I'm not sure if I will be issuing a cheque each month or they will just take it off over his pensions...I've saved all his expenses for tax time and will try to talk to you before....I tried to update my profile to add my email address on it but couldn't figure how to do it. amberellen12@yahoo.ca to exchange phone numbers I have slow speed dial up and it isn't letting me send out emails.
Wolf, thanks again for all of that useful information. I think waiting 6 months after long-term disability is finished is a good idea; however, as LFL rightly points out, the insurance company would be looking for reimbursement if we received money back-dated to the date of diagnosis (not sure how they would find out but they always seems to have a way).
Am I understanding you correctly that if I applied for CPP disability they could, if approved, backdate the amount to the date of diagnosis as well as increasing his early monthly amount to full pension? Right now, he receives $815 per month so not sure what the maximum would be.
We in Alberta have to put the name down of three facilities that we wish to place our spouse in. I finally got a call today to say that his name has finally been put on a list. I am praying for number 1 as that is where both of our children now reside. I now have to hope that we get the Seniors benefits so that it will cover the costs. Had we been smarter when we were younger we could have saved for this day but our craziness a couple of years ago put us in bankruptcy and we lost it all. Oh well that is just one of lives lessons. It just helps knock down my stress level a little bit. Thanks for all the great advise above I will be looking into the CPP disability.
Velvet, am so glad to hear that you are finally on a list and I hope that your placement will be what you want. It sounds like your system in Alberta is a little different than here in BC. I'm fortunate in that I think I will be okay financially and might be able to afford private care, if needed, for a short time before he could go into placement in the public system.
We were able to get a lot of good information here from Wolf and I just read on a different thread that he doesn't post as much now because he is happy. That is good to hear and I wish the same for you and for me and the many others here on this very difficult journey.