My mom fell and broke her ribs back in November. Everything after that has been one domino to the next...hospital, then rehab, then step down, then a broken hip and back to hospital, etc, etc. She is now in the step down unit of a SNF and has plateaued. She keeps getting UTI's and her dementia has steadily worsened. The therapists say that she should not ever go back home unless she has 24/7 caregiving which is not an option for her or for my family. Both my husband and I work full-time and have no way to provide care for her other than for a limited amount of time. I have someone who can be in the home to assist her for approximately 6 hours per day, but that's it. The neurologist feels that she will improve once she is home in a familiar surrounding, but family members are encouraging me to go ahead and sell her house to admit her to an ALF. All my mom wants at this point is to go back home, and there is a huge part of me that feels like I should give her an opportunity to try it. I am being torn apart and literally just don't know which direction to go at this point. Either way seems like I am not doing right by my mom. What do I do?
Sadly, elders are a large market and big business, and over the years I've learned that some facilities are driven by this as opposed to really insightful assessments.
One time a staffer in ER began calling ALs as he determined Dad wasn't suited for living alone. He NEVER asked us; he just "assumed". When he shared his information, it was all I could do not to tell him bluntly how I felt, but I did manage to be courteous and ask him if he planned to pay for Dad's stay at the ALF he was trying to select.
He gasped; I stared firmly back at him and told him that he had no authority to make arrangements with financial implications, and that the family made those decisions. He backed off.
What he never even asked was what home arrangements had been made, what community, family and church support existed. He just a-s-s-u-m-e-d facts not in evidence.
Another instance of gross overstepping mingled with self interest was an arrogant NP (first one I've met who was so worthless) who first recommended that Dad rescind a DNR order and accept that he's lived a long life and it's time to let go, then had the audacity to suggest considering a board and care home run by some family members.
If that day hadn't been so traumatic (a blizzard had materialized while in the ER and I left to find 7" of snow on the car, parking lots, and all the roads home), I would have followed up with the Administrator and filed a complaint against her. As it was, I couldn't even remember her name. In retrospect, I wonder if she really was an NP; she just didn't have the qualifications.
BTW, Dad lived successfully at home until the last 2 months of his life. He was 99.5 years old then.
If I were in your position, I would try the home remedy first; just being back in someone's familiar surroundings is healing in itself. If the decline continues, re-evaluate and make mid-course corrections.
Best wishes for a good environment for you, her, and for making the best choices available.
If she will allow caregivers that she pays for to come in and care for her 24/7 then she may well do better at home.
If she will not allow caregivers in then she can not come home. it really is as simple as that. (sounds simple but it isn't)
So if she is competent to make a decision put it to her that way.
If she is not competent then it is up to you to decide if she will tolerate "outsiders" in her home.
It is all fine and good for the neurologist to say she will do better at home but unless the neurologist is going to be the one caring for her the ultimate decision is up to you and if your mom will accept help in her home.
Then take a look on a caregiver website and look for one to stay there at night. Advertise that the position is what is known as 'sleep duty'. It pretty much involves the caregiver checking on the client a couple of times overnight, changing their diaper or taking them to the toilet. The price for this kind of caregiver is negotiable and can be gotten for very little.
There may be some gap hours in the course of a day when your mom might be alone. That's okay depending on how advanced her dementia is. Would she be able to use a LifeAlert bracelet or pendant? Can she still use a phone on her own?
All care facilities will tell a family that a person must have 24 hour round the clock care and many times that is not always the case. Sometimes the person is fine to stay for a few hours at a time in their home by themselves.
You know your mom better than they do. So you would be the one to better decide if a caregiver arrangement like I've told you could be a possibility for her.
I will say that your involvement is likely to be very high with her at home; with lots of phone calls, getting supplies, lab work, medications, trips back & forth to doctors, the list is truly endless when elder care is involved from home. Be prepared for that.
If things don't work out, have Plan B in place; to sell mom's house & have her placed in either Assisted Living or Skilled Nursing, depending upon her care needs at the time. Assisted Living is designed for elders who need minimum assistance and who are pretty independent in general. Skilled Nursing is for elders who have much greater care requirements and needs in general.
That said, my mother has lived in Assisted Living & now Memory Care (with moderately advanced dementia) since 2014. She's fallen a total of 70x since late 2015. My point is, there is no way to prevent falls, even in a place that's specifically designed for safety & built to accommodate wheelchairs and the like. The difference with her falling in managed care is that the team picks her up; if she were at home, I'd have to call 911 each & every time to have her picked up since she weighs 200 lbs and it's impossible to pick up that amount of dead weight (she's wheelchair bound).
Whatever you decide to do, it's all hard; the decisions are tough & we all tend to second guess ourselves no matter WHAT. The elders tend to complain in ALL situations, which gets us to question ourselves even MORE. It's kind of a no-win situation, is my point. Make a decision & don't look back. There's no 'wrong answer' here, or 'one size fits all' care options that work for everyone. Your mother may thrive beautifully when she's back at home. I've seen dementia get very bad one week, then get much better to where my mother seems like her old self the next week. It's tricky that way. However things work out in your case, wishing you the very best of luck. Know that you're doing the best you can and it IS good enough!
If you (or someone) is her PoA, then great! That's half the battle for most families with senior LOs. If she hasn't taken this very important step, she must do it asap, as well as create a Living Will, make someone her Medical Representative (which is different than a medical PoA and has to do with HIPAA rules) and consult with an elder law attorney so that she and family can understand how to make sure she manages her finances so that she will be able to qualify for Medicaid, should she need it. In many states the Medicaid app "look-back" period is 5 years... and lots can happen in that time. Good luck!
At least in an assisted living facility, you will have people checking on her to make sure she's ok. And you can decorate her room there with all her familiar things from her home to make her feel more comfortable. It's hard I'm sure, but again you have to do what's best for your mom and her safety. I wish you well.
There are many kinds of dementia and many times a person improves greatly when they leave a facility and can go home. Of course this isn't the case when a person is advanced in their dementia.
Like I told Trendi, I've worked for many elderly people over the last 25 years who did just fine at home alone for several hours during the day when there were time gaps and a caregiver wasn't with them.
A nursing home, AL, or live-in caregiver aren't always the only care plan that can work.
Right now I work for a woman with dementia who still manages on her own. She needs help with things like hygiene, housekeeping, and making sure she has meals and takes her meds. Her daughter calls her from work a few times during the day and stops by there to check on her after she leaves from work. This situation is working just fine too.
Facility placement isn't always the answer.
You are asking all the right questions. I've been an in-home senior caregiver for 25 years. In that time I have had many clients whose families were told that they must have round-the-clock 24 hour care because it's not safe for them to be alone for five minutes. I can say in honesty that in about 3 out of 5 cases I've worked long-term that this simply isn't true. The elderly person (even with mild to moderate dementia) functioned just fine during time gaps when there wasn't a caregiver in the house. Most of them watched tv, or napped. They did all right because what they really needed was a caregiver to make sure the housekeeping was kept up, that they were eating well, taking their medications, and helping them with their hygiene.
I remember an elderly lady I worked for who was in rehab from having hip replacement. Before her hip replacement she was living on her own. She dementia and was also incontinent. The rehab was adamant about her needing facility placement or a 24 hour caregiver at home (I find it more than a coincidence that the rehab was also a nursing home with long-term care). Anyway the family used their own judgement and brought her home. Then I came to work for her.
I was hired for a certain number of hours a day and suggested to them that the time would work better if it was split. I did some morning hours to get her up, washed, dressed, fed, and medications. Then I came back in the afternoon to do the housekeeping. Your mom may benefit a lot more from the six hours a day caregiving she gets to be split into 3 hours in the morning and 3 hours in the evening. Or even split to three visits a day for two hours at a time (if it's agency provided, you might have to pay the caregiver a little on the side. You may not have to because most agencies have a two-hour minimum for assignments).Your mom could get greater benefit from a caregiver coming at different times of the day rather than doing one hour of actual work then just sitting there for the other five. My client improved greatly and we reached a point where I was taking her out for lunch, shopping, and visiting her friend a few times a week.
We did have a person who did two hours in the evening. Just for supper (which I either had prepared or if if was an out to lunch day the client wouldn't eat supper), diaper change, meds, and put to bed. Those two hours a night cost $25. This was recently and I live in a very expensive state.
This worked well for some time. After a couple of years I did bring in an overnight person for sleep-duty who showed up long after the client was in bed and asleep. Her job was checking on her a couple times a night and taking her to the bathroom. Then it became checking on her and changing her diaper.
This kind of arrangement might very well work for you and your mom.
There are 2 kinds that I know of: one is like a padlock, with a handle that fits over a door. The other is attached to the studs adjacent to the door. It should be installed by someone like a carpenter, or someone who can definitely anchor it in the studs.
The problem with the handle version is that the handle can be sawed through, albeit not quickly. Dad and I both tried to get a saw blade into the handle area; both of us were successful. That model was then no longer considered.
If an emergency occurs, whoever calls EMS (and that includes someone from the company providing the Life Alert service) provides the code to get the key from the lockbox.
That was a literal lifesaver for us. Dad called me on his LifeAlert pendant, or notified the company directly simply by pressing a button; they contacted me as well as EMS and I gave them the lock box key code. (I don't recall if we gave the pendant company the lock box key code, but it wouldn't have bothered me to do so.) EMS was already at Dad's house by the time I arrived...precious time saved.
If you do get a LifeAlert pendant, please do contact the contenders with a series of questions before selecting one. I called several; some would only send out brochures and wouldn't discuss rates or anything else. One didn't return my call for a few days. Obviously they weren't serious contenders.
The company I selected initially began business by providing home security from theft but eventually segued into home security for elderly or compromised individuals. They were top notch.
I'll never forget one event: Dad had fallen, called me directly, and I called EMS. He had accidentally activated the call to the life alert supplier. When I checked my cell phone at the ER, I found several calls from them; they just kept calling and calling...a very good sign.
so for my gmaw- she greatly improved home. not walking but i see improvement on other things
Three years ago my dad was in rehab and after went straight to ALF then SNF.
I often find myself wishing we would have brought him home if just for a bit to have him in his home again and say goodbye sort of.
Stupid I know, but I often wish we would have done that and found a way to make it work.