This is all new to me. My mom is 86 and has been progressing from mild to moderate/severe cognitive decline for the last 7 years. It is definitely dementia, not age-related changes from everything I've read.
To most people's surprise, she was living on her own still with my sister and I providing her hot meals, cleaning, meds, bill paying, etc., and was not an elopement risk because she was down to limited mobility from arthritis and using a walker. Fast forward to to June 9th when she took a fall and although she only suffered from a contusion or two, her blood work was all wonky (high lactic acid especially) and her EKG was abnormal. They concluded she'd been dehydrated, and it was just a bad chain of events that led to her falling. They kept her overnight to observe and hydrate, but decided to catheterize her because they said her bladder wasn't emptying all the way, yet the next day, the doctor signed discharge papers, and the social worker wanted to know who was going to provide her with 24-hour care from now on.
I really didn't know what we were getting into, as my mom had never been hospitalized before, but I said, how can you discharge her when you have a catheter in her? So the nurse said not to worry, they'd keep her another night. Well one night turned into SEVEN because we told them we didn't have anyone that could watch her 24/7, and she did not have the money to pay for that care. By then, she could no longer walk and some days could barely could move her hands to eat. They said it was because the high lactic acid levels had caused all her muscles to deteriorate, and said she needed to go to a rehab now.
The first one refused her, and the second one that took her has turned out to be a nightmare. My sister and I are there about 8-10 hours a day to make sure she is cared for as she does NOT know how to use the nurse call button. They asked before she was admitted what they should know about her to help her, and I said she startles easily, and if you just talk to her about what you are going to do before you do it, she will understand much better.
This has never been done. They injured her on her first day there by crushing her arm between a lift and the bathroom safety bars. So now, they won't let her try and use the bathroom and use a Hoyer lift every time to make her use a bedpan. This causes her to scream because no one ever talks to her and reminds her about what the lift feels like, and it terrifies her. They have totally ignored that she has dementia, so she doesn't understand why they are grabbing her and rolling her over in her bed to clean her, or swinging her in the air by a lift to weigh her, and I'm just devastated.
I've tried talking to the admin, and all they say is, do you want her moved to memory care? I said, she is here for rehab, and is only insured for the first 20 days, I need you to make the professional decisions as long as she gets all her PT/OT and Speech. In the meantime, I can't get any of the nicer memory care facilities to consider taking her because they are using a Hoyer lift and not doing enough to help her regain her independence to use the toilet. And she doesn't have any big medical issues other than the dementia, so I hate the idea that she might have to go to a nursing home only because of the toileting issue!!!
I am so lost and confused by this whole process, and don't know what to do. I am either at her rehab, or at her house getting it ready to sell, or visiting a facility to see if they'll take her, or doing research online to see if I should be putting her house in a trust and signing her up for Medicaid since she little other assets. Just too many questions and no central place to ask them.
and I could no longer care for my mom from a wheelchair, even with live-in help.
Is there a senior resource center in your community that can help to guide you? I discovered through the years of caring for a mother with dementia, that what works this month may not work next month. It sounds like you are going through that transition now.
I found a facility that would keep her as a private pay patient for 14 months, then accept Medicare. I hired someone to help me clean out and pack up her home, sold it and used that money to cover the 14 months. At the same time, I found someone to help me navigate the Medicaid application process. Her Medicaid came through just as I was running out of money for private care. She died a month later.
I am thinking of you and hoping you will find peace. People who have not been through this do not understand how difficult it can be. Today I am back on my feet but still traumatized by the experience.
Unfortunately, there is also something called "institutional dementia". Which on top of "regular" types of dementia - is compounded by isolation or a hospital stay, or a move to rehab or LTC. It is sometimes reversible, but in my experience, once someone has moved from location to location to location with dementia -it is an uphill battle of epic proportions. My FIL's doctor advised that each move from home to hospital, hospital to home or rehab, rehab to home or LTC, LTC to hospital....each one essentially sets someone with dementia back irrevocably and its like they are starting at square one with their healing, settling in, etc.
Sadly, it may be time to consider LTC as others have suggested. My grandmother was very independent - until she wasn't. And once she wasn't - she needed 24/7 care for the rest of her life.
Elder care is a strange mix of waiting for the other shoe to drop and waiting for that switch to flip - and honestly - in our case for both my FIL and my grandmother - the flip of the switch...was just that fast. Day and night difference in just the blink of an eye.
From your post, you seem to be ready to handle this and are asking the right questions and asserting yourself when you need to as your mother’s advocate. You apparently have a sister who is able and willing to help. You don’t say whether you are both working or if you have a significant other or kids to worry about. Those are importantly factors. You do have POA which is critical. I completely understand your disappointment re the need for the Hoyer making your mother only eligible for SNF placement. My mother left rehab unable to stand or pivot but with her mind still mostly intact. She had only mild dementia at the time and no severe medical problems or conditions. She did not need advanced medical care but every AL or MC facility in my area said they could not take her. That, and the fact that the rehab, which was a SNF, gave her the beginnings of a bedsore, led me to move her to my home. And yes, their failure to re-position her and to change her pants when wet directly caused this skin breakdown. Fortunately, with the help of my Primary Care doctor, I have been able to keep the damage under control and prevent further damage. Homecare is really difficult if you don’t have the finances to hire part-time help. But, the reality of institutional care is you will have to stay on top of the care all the time and will learn more medical knowledge than you ever wanted to. Sometimes it seems there are no good choices - only the best of the worst.
Some people have advised you to team up with a social worker and/or contact the state ombudsman. Nothing wrong with that, but personally, I would not consider either of those ideas to be my first priorities. Your priorities are finding a suitable facility and figuring out how to pay for it. You and your sister are the best ones to make those decisions. Input from others “experts” can be helpful, but don’t expect anyone else to care like you do and don’t turn the reins over to a social worker or anyone else. That said, you will need a qualified attorney to guide you through the Medicaid process and other legal matters such as selling her house. My to-do list:
1) I would not 100% rely on the facility social worker to find a SNF. Do your own homework on this and then feed the names of the best ones you can find to her so she can give you feedback. Visit the facilities unannounced - more than once if you can. Remember, sometimes having proximity and convenience to drop in and visit takes precedence over a top of the list facility that is a longer drive. But ratings and inspections are also an important guide. You can compare facilities on Medicare.gov. Make sure the facility social worker makes calls for you to get the transfer going. Sit there with her while she does (as one poster suggested) and take notes. Make the calls yourself if she doesn’t. It is ALWAYS easier to transfer in from a hospital or rehab facility than it is to go from a personal residence.
2) Get an attorney as stated above.
3) Do not rush to get a dementia diagnoses unless advised by the attorney.
Both my grandmother and granny were is good facilities, on medicaid. Both were new and sparkling, they never smelled and the staff and residents were all content. Happiness is not a thing in a LTC facility, just so you know, so you don't have that expectation. Then fast forward to current day and both facilities are still nice and sparkling but, the care is abysmal, you can see and feel the bitterness in the staff and the residents are just there waiting to die, that's the environment you want to avoid.
Use this as a guide post for a good facility. People should be getting compassionate, quality care, decent food and staff that aren't bitter. The management is in control of all this, so look beyond the nice and look at what you can smell, feel and perceive in a facility. Often you will get better care in a religion based facility because it's the people that get the extras, not the building or property. Look for one that doesn't appear to be a morgue, you want the residents to be out and about in the facility, not drugged until they can't get out of bed, seen that and oh my.
Mostly know that you can move mom at any time if your 1st choice isn't a good fit.
For my dad, I chose a small board and care home because all the great amenities at a bigger facility were a waste of money, he would not use them, so why pay for them. You get better caregiver to resident ratio as well. They had and used a hoyer lift for residents requiring that assistance.
You are going to be very busy until she is placed, take a deep breath and begin, you got this!
Check out aginglifecare.org to see who is in your area. Each one has a specialty profile.
She is apparently still not diagnosed with dementia? That must be done.
Contact Social Services so that you can work with them on placement and on applications to Medicaid. Important now to gather all information on her assets. That will be step one in getting her applications done.
I don't know if anyone is POA; in seven years of knowing this was on the way that would have been crucial. But if not done, it is too late if there is dementia; ask the social workers about being appointed as her conservator or guardian to get her safely into care now. You will be working closely with them, and this should have been started on DAY one of rehab when it was likely clear that problems now will be ongoing.
Do know, in my experience as an RN and as a daughter, falls can represent the beginning of the end, and for my own mom that was the case with fall leading to catheter leading in infection, to rehospitalization, to pneumonia, to hospice and so on.
I wish you the best. You will need to work as closely with the social worker as you are able.
You may have already decided but I wanted to tell you this.
I met a family recently. The Mother was living in a very nice, quite posh, aged care place for a while (through the earlier dementia stages). The family felt it was better suited to those stages & now as the Mother progressed they were not so happy. A bad fall worsened the dementia & stole her ability to walk. They moved her to a facility for bed-bound care & were really pleased they did.
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