The Personal Health Navigator is available to all Canadian patients. Questions about your doctor, hospital or how to navigate the health care system can be sent to AskLisa@Sunnybrook.ca
The Question: My Mother has been in hospital for the last five weeks after a sudden deterioration. She is not able to go home and needs 24-hour care. It has been suggested we put mom in a retirement home where they say they will provide 24-hour support. She is not yet medically stable and she is unable to walk, toilet herself, bath herself or take her medication without prompting. She has become cognitively impaired also. I am really concerned about moving her to a retirement facility to wait for a long-term care bed. She does not even know how to push the nurse call button. We don’t want her in the hospital any longer than necessary but I am very concerned for her safety and well being.
The Answer: If you are on a list for long-term care home, you stay on that list, no matter where you are residing – a hospital, home or retirement facility. According to Anne Marie MacLeod, operations director of the Holland Orthopaedic & Arthritic Centre at Sunnybrook, you do not lose your spot.
“The retirement home is often the next best choice, because they do have some supervision and they are not on their own,” Ms. MacLeod said in an interview. “If you put them in the retirement residence, where they are getting regular meals, help with activities of daily living (such as bathing) and some activity, they can do quite well.”
Your mother is what is called in health care circles as an “alternate level of care” patient, which means the hospital is not the best place for her. Depending on her choice of homes, the wait for a bed could be months or even years.
Her circumstance is faced by thousands of patients every day. According to a Canadian Health Services Research Foundation report, an estimated 7,500 hospital beds, representing 14 per cent of all acute care beds in Canada, have patients in them, awaiting care elsewhere.
From a system perspective, when patients are waiting in hospital beds, other patients have operations postponed, long delays are encountered in emergency and some patients have to be re-routed to other hospitals.
It sounds as if you recognize that the hospital is not the best place for your mother and the most preferred option – a long-term care facility – is not available. A retirement home concerns you because the level of care is not there.
“Two of the main reasons why people are admitted to long term care is cognitive impairment and incontinence of some sort,” said Donna Rubin, chief executive officer of the Ontario Association of Non-Profit Homes and Services for Seniors.
Ms. Rubin said that most retirement homes would not welcome medically complex patients unless the necessary support could be obtained. It is usually purchased through the home or an outside agency, she said, adding, “for a variety of reasons, they are generally not equipped to provide that level of care.”
Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts. Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre. Send questions to AskLisa@sunnybrook.ca.
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Such a Poor System.
Many Seniors are being Treated Like Hostages and Prisoners’.
Abused and Neglected; Families Lied to.
In My Opinion, to Clean Up the Health Care System – There has to be Cameras- which I was told were Forbidden in the Nursing Home My Mother was in…
Health Care Workers should NOT BE HIRED FULL TIME! They are Not Immune to Care Giver Burn Out- and it Shows in the Performance.
Alternative Decision Makers also seem to have LITTLE TO NO INPUT as to the Quality of Living.
When you don’t get the Same (Poor) Level of Care at a Hospital; and you have to bring in Meals and Take Cloths Home to Wash them…./ A Bed Bound Person can’t get a Bath at least ONCE A WEEK!
Well, there’s Lots to be DESIRED and LOTS NOT TO BE DESIRED!
My husband does not have a pow or will,
who is responsible to pay the hospital? the invoice is directed to him personally c/o me?
I guess it’s your Husbands Responsibility- However- If they are Sending a Bill to c/o to you-
If you are able to pay it on You Husband’s Behalf… I suggest that you do so.
If you are NOT – I believe the Province may, Apply for a Treasurer on “Behalf of Your Husband”
My cousin is in hospital and from a nursing home. They are releasing her the end of Nov. and we don’t want her going back to this nursing home as they did not provide proper care what are my rights on refusing to go back
My husband and I need some advice on how to handle a situation we are facing with our local hospital and LTC for our mother. She has been on the list for a local LTC facility for over a year now and is currently at 5th on the list. She was recently admitted to the hospital with another health issue and she is quite weak. She cannot live on her own any longer and has been receiving assisted living help for many years! We truly fear for her safety. The hospital wants to discharge her home but she needs 24/7 care which is not available through assisted living. The hospital is adamant that she cannot stay there until a bed is available at LTC facility. Assisted Living is in agreement with us that she needs 24/7 care but we don’t know what other options we have at the moment. The hospital has set up a meeting with us to discuss options and I would really appreciate some advice on what we should or shouldn’t agreed to.
My husband is stuck in a SNF rehab nursing I want him home in his apartment in pace daycare and nursing you can have his room lovely place you cone in and never go out ccable TV very high class its your call they hopefully will send my husband home once they know your needing a longterm bed I have been walke ed out buy police taken tooony bin and told no by the whole elderly help book if you kiss there butt they like you see there doctor do as they say if not to the bin you go it’s not your life its there’s enjoy my husband has moved from a vital 62 to a vegitive one with no mind
My father was put on a crisis list in hospital for a nursing home. He came home with me for approx. 3 weeks and we were informed a long term care facility would take him. He is not happy there (very poor communication with staff) so we are wondering how we go about putting in for a transfer to another facility and are we even able to do that? Do I have to get in touch with CCAC again? He is definitely not able to look after himself on his own. Thank you.
Hi there, my mom was placed in a nursing home by my sister who says she is
The power of attorney. My mom has been tested and has been said she has memory loss- dementia. My mom still has her mind fairly good at times. She
Says she doesn’t want to be there, dislikes it very much. She wishes to go live with her son. Power of attorney is saying no. We are a big family and like to see our mom a lot. We been given letters for visiting hours which is hard for anyone to follow as most of us work. I think my mom is being treated wrongfully by this home as she should have visitors when she feels right to do so. No other residents have scheduled times.
Hi , I need help, my mom and dad were both in hospital same room for 4 months awaiting a nursing home. My sister is power of attorney and is not forthcoming with to much info.My mother was moved to a nursing home 4th on the list . It’s awful there , and it’s even more awful that they are now separated . When I tell my sister that she should have just left them together until there was one available to take both of them , she says she had to say yes to this or my mom would have been put at bottom of the list again . Is this true ?
Oh, how difficult to have both parents waiting (((( big hugs )))).
Your sister is telling you the truth. If one refuses a spot offered from your list of 5, the person can be taken OFF ALL lists for a period of time..and then start again.
Your mom was placed when a place became available on her list of 5.
She will have a higher priority to be able to transfer to her first choice when a spot becomes available. When there is a spot for your dad on his list of 5, he will go there. If it’s not his first choice, he will be on a priority list to get transferred there when a place comes up. Spouses who are placed in different facilities get a higher priority to ‘repatriate’, or get them in the same place again. Hopefully mom and dad’s first choice is the same. One will likely get there first, and then the other will follow. Hang in there, hopefully things will come together more quickly than expected.
What a journey we are having. There is so much information to navigate through, and we have found out that our Local Health Integration Network (LHIN) has a special agreement with our CCAC that is actually illegal. My father is awaiting placement from hospital to long-term care. Our CCAC illegially allows hospital patients who place 5 facilities on their wait list to obtain crisis status. Crisis status ultimately means you will be ‘months’ getting placed. If you choose less than 5 facilities, you cannot be considered crisis. As a result, you will wait for YEARS on the waiting list. This is only true for our particular LHIN which includes Haldimand-Norfolk. Our family is unable to find 5 places that are acceptable in our LHIN to place on the waiting list. We have had to circumvent the system by placing a facility on our list that is outside our LHIN. Facilities outside of our LHIN will not accept the crisis status (and rightly so) because the patient is in hospital and obviously not in crisis. The facility we have chosen outside of our LHIN has a 2-year waiting list for those not in crisis. This is to our benefit, as we do not wish to get accepted to this nursing home, but it fulfills a fifth choice to keep a crisis status while in hospital in our LHIN. The Ministry of Health has advised me that they are unaware of this special agreement between the CCAC and the LHIN and if I was to file an official complaint, they would address this and ensure that it was ceased immediately. However, I am unwilling to jeopardize a somewhat speedy placement at this point. I will be making an official complaint after placement to a long-term care home is finalized. Our system is very broken and will soon be a complete disaster as the baby boomers head for long-term care.
What a strange interpretation they are using of ‘crisis’. Definitely NOT what we were told or what appears online! I would hesitate to be on a crisis list unless it is EXTREMELY urgent. My understanding of ‘crisis’ means your loved one can be placed ” anywhere”
Take mine they are kid napping my husband to fill a bed god food Nide place i want my husband home he’s now a veg with supper depression and unable to talk as you can guess courts are slow near death happy haven nearer to god
Yes the hospital will charge you…were paying the hospital $1645.00 every month until there is aong term bed in ontario
Mom was forced to leave hospital and my mom was assisted but the choices where limited.( have her waiting in a retirement home). Can someone help me with a family issue. I am power of medical trying my best to find an appropriate place for mom. When I ask my mom where she wants to go she says is it Ok with my sister. This makes it very difficult for me because my sister and I do not get along. I know my mom wants everyone to agree but there is only 5 choices and my sister’s area has long wait periods which l don’t want to waste my choices. Please HELP
If a person is in the hospital and cannot be alone at home, and they are waiting to get in a nursing home………does the hospital charge for the hospital stay while the person is waiting to get in the nursing home. Is that charge funded elsewhere? Doesn’t seem fair when the person is ill with no where to go?
Hi Marg: It’s important to keep in mind that it’s not free to stay in a nursing home. So, if you no longer need the services of an acute-care hospital, and you are waiting for a spot in a nursing home, there would be a charge for your continued stay in the hospital. That hospital charge would be roughly equivalent to what you would pay for a nursing home bed. The exact fee would depend on your financial circumstances. For a better understanding of what you or a family member might pay, you should speak to the person responsible for discharge planning at the hospital. Many hospitals also have social workers to help patients and their families with these questions.
Hi Marg Most hospitals will try to get your loved one out of hospital regardless of what’s best for your loved one. They will give you two choices. Either home with you or to a retirement home. If that doesn’t work, they might even try to convince you to take a short term stay in a nursing home that you haven’s even chosen! It’s important for your loved one to get assessed while in hospital by ccac and designated as approved for a nursing home. Then you make your choices – as many as 5 or as few as 1. It’s up to you. Once that approval’s done, you cannot be forced to move your loved one out of the hospital no matter what unless it’s to a nursing home of your choice. Those are your rights. I ‘m going through this right now. They may try to force you but stand your ground and learn your rights. I’m surprised the article above makes no mention of this. For information of elderly rights, google advocacy centre for the elderly….wonderful people truly wonderful… best of luck to all… it’s a viscious system
Thank you so much for sharing your experience.I am going through the exact same thing with my mother.
ACE advocacy for the elderly have been such great help,they truly are wonderful people that advocate for elderly rights.
My husband is currently in hospital after attempting suicide. He is 74 and has dementia. I am being called two and three times a day to set up meeting. I went to one meeting only to have them bring him in. he is a danger to himself as well as me. There has been violence in the past and I have supplied all court documents to them. the last Dr. said it was interesting but several years ago! Hello??? Dementia gets worse. They are trying to coerce me into bringing him home. This morning the money card was played. He has been in there for 21 days. When should I start paying and do I need a Lawyer?
Scenarios like this highlight the need for advance directives. Decisions about end of life care aren’t restricted to a term in palliative. How one wants to live to the end of their life is something that needs to be communicated and shared with family and designated decision makers. Its not an easy process, the conversation is difficult and the choices are challenging. When children are conflicted by the decisions they need to make on behalf of their parent then the parent just hasn’t prepared them properly. As modern medicine has us living and lingering longer, more of us will face these kinds of dilemmas. Preparing a roadmap in advance will make the living part that much better.
While your mother is on a dreaded waiting list, I would seriously consider homecare services.
Every situation is unique to a family, however case management in homecare can tailor services whether it be assisting with ADLs, ambulation, med reminders, ROM exercises, proper nutrition, cleaning, etc. to help your mother stay at home safely. Levels of care vary so go with an experiened caregiver and company that has been around awhile. Do your due diligence. Some homecare companies have no minimum hourly services per week and can offer up to 24/7 care and even live-in services. You want to have peace of mind that your mother is being treated in a compassionate and respectful manner, there are professionals out there that want that for you as well.
Do home health care, nursing homes are disgusting no matter how good they are you have to watch everything. My mom was starved down to 96 lbs, they would not pit her hearing aids in, and her clothes were stolen or she would sit in someone else’s clothes. I tried to move her to another facility but they put disparaging comments about my mother. My brother had power of attorney made the decision because my father had heart issues. My dad did pass away and 34 days later my mother did too. My dad died of a broken heart, it’s hard to see someone you love end up in those places.
FOR ANYONE GOING THROUGH THE HOSPITAL CCAC SITUATION, please read this important information. Hi Brenda. Most hospitals will try to get your loved one out of hospital regardless of what’s best for your loved one. They will give you two choices. Either home with you or to a retirement home. If that doesn’t work, they might even try to convince you to take a short term stay in a nursing home that you haven’s even chosen! It’s important for your loved one to get assessed while in hospital by ccac and designated as approved for a nursing home. Then you make your choices – as many as 5 or as few as 1. It’s up to you. Once that approval’s done, you cannot be forced to move your loved one out of the hospital no matter what unless it’s to a nursing home of your choice. Those are your rights. I ‘m going through this right now. They may try to force you but stand your ground and learn your rights. I’m surprised the article above makes no mention of this. For information of elderly rights, google advocacy centre for the elderly….wonderful people truly wonderful… best of luck to all… it’s a viscious system
Thanks Wayne! going this right now with my mother at Grand River Hospital in Kitchener.
Hi Mary Jane,
I am going through a similar situation and would like to discuss with you if interested. Tks.
I’m voingngrough this and I feel almost threatened to get my mom out of their hospital The CCAS woman refuses to talk to me
Hi Wayne, can the hospital charge a fee equal to a retirement as a copayment?, I was told by someone in the residences that they are not allowed and will try. And that is just what my dad’s hospital, north york is asking for copayment
Thanks for the info. My uncle is currently in hosp… had a stroke, cognitively impaired, incontinent, can’t walk, talk, etc. the hosp. said he has to move out and is giving me only 2 weeks notice. He does not have anyone else but me, but my home cannot accommodate his needs…stairs everywhere, etc. have to fin an LTCH asap. So, thanks for sharing.
Were paying a co payment for my mom she is in bowmanville 1645 a mth
Hi my mom is in the hospital and we are waiting for a long term care bed…we did our homework we went to to retirement and assisted living…both could not meet my moms needs and they met her and told me she needs long term care.the social worker at the hospital didnt help at all I went over her head ..I did things on my own…..so she is in the hospital still..we pay a co payment of $1645.00 a mth.sometimes you have to push …
I am dealing with my disabled mentally damaged hus band being caged like a pet monkey ya he’s a live but not buy much a small uti and the hospital kidnapped him to rehap he’s now lost the little he could do back to vegetable and they want to keep him till he dies that soon no one cares about poor or old or disabled you die they fill your space you live they get medicare medicaid your meat that’s it