Ugh, I know, I have talked about this before. I'm so sorry to be a broken record. I put in an application at the best place in my area for her to move in there, most likely into MC.
I'm feeling so conflicted. I am so done with her living with me. But I know she is going to be HURT and PISSED.
I thought there was a waiting list and now the admissions lady says we can get this thing going right away. I feel like mom is still in a weird state of ability vs her level of dementia. I would feel kind of horrible for her to be one of the highest functioning people in MC. That just sounds hellacious. She'd be in a 24 bed locked unit and if most of the people have much more advanced dementia than she does, seems like it would be so boring and awkward for her.
I also don't know how to get her to go there for an evaluation where they make sure of the level of placement most appropriate for her. It'll be horrible for me to bring her back home after doing that. She's already pulled the crying act when I've mentioned her needing more care.
I just don't see how she could navigate AL.
I keep waiting for that big something to happen that would make this transition simple. So far, nothing has happened for years. If she falls, I'm calling 911 (she weighs over 200 lbs.) and will have them take her in for evaluation and then I'll push for placement. But of course when you wish for something to happen, it's not going to.
I have just increased her caregivers from 3 to 5 days a week.
We went to our camper with her this past weekend and it was just horrible. A small confined area and one little bathroom and she had a bout of diarrhea - NOT fun. Never happening again. Came home early and canceled our plans to go back this coming weekend.
We fibbed about the reason the nurse was there. We said that it was for insurance, or something like that.
They want your money. It’s EXPENSIVE. They should be happy to come to her.
Nothing will make the 'transition simple' or make your guilt any less. You have no reason TO feel guilty, of course, b/c you've done enough for mom and now she needs a level of care you're no longer equipped to provide for her. You're just looking for 'reasons' to allow yourself to DO it. And you don't need any reasons. The one reason is, she has dementia and needs that exceed your scope of abilities, and it's time NOW she go into managed care. In fact, it's BEEN time for a long while already, you're just holding back for some reason.
Tell the admissions director you need a nurse to come out to YOUR HOUSE to do the evaluation. And that you'd prefer mom to go into the highest functioning group in the MC, at least at first.
You're expecting the worst b/c you've conjured up all sorts of horrible images in your mind of how bad life will be for the Poor Soul in Memory Care. I can tell you my mother quite liked being the Queen of Sheba over there, getting dressed up and comparing her rings with the other ladies' rings. Who's got a nicer top on today and who's eating more lunch than whom? It's a big day camp for seniors, Memory Care, and they do all sorts of fun and silly things, like have walker decorating contests and pretzel rod decorating contests. No lie. They have FUN. And they do more together in that activity room than they will EVER do alone in our homes in the kitchen, that's a FACT.
Stop over thinking this and just move forward. It's time now, my friend. You're tired and mom's ready.
You're right that her lifestyle at my house is not phenomenal - I know that's not how you said but it IS true.
I guess my hangup is mostly around the 2 times that we've touched upon her moving out, it has NOT gone well. Cry, cry, cry. It makes me crazy.
I need to ask them to come here to evaluate her and I just can't have them do it there. Will just make things impossible.
I know you're right that it's time and I just need to do it.
I'm going to ask how they deal with the different levels of dementia there. It's a kind of small facility - I think it's 24 beds.
First, it's likely they'd send someone to her to evaluate her, not the other way around. My mom was in a SNF 40 miles from the MC I was moving her to, and their admitting nurse came all that way to evaluate Mom without thinking twice. It's what they do.
Also, Memory Care is always going to have people with varying degrees of dementia and needs, and the place should have programs in place to handle that. Mom's MCs had three distinct areas -- one for folks who were completely independent and could do things like watch TV on their own, make their own coffee with a Keurig and read books and magazines, one for organized activities like bingo, crafts, trivia games, and exercise games with the mid-range-ability group (the majority of the residents), and a third area for those with the lowest cognition. Those folks had the assistance of multiple caregivers for their activities, which was mostly things like sing-alongs and manipulatives like giant Legos.
Ask, ask, ask questions until you're satisfied.
They asked me to bring her in for an eval. I just emailed to see if they'll come here. I think that's much more reasonable. IF they can do it in a vague way that in no way mentions her going to MC. I also asked about how they handle the activities needed for various levels. More info will make me happier.
After ( another ) stroke, Mom could no longer live independently. She had to be moved to MC, but ,she was high energy and would have been the higher level functioning in MC so Assisted Living was also a temporary option…but just barely due to her memory…she would have ended up in MC sooner or later anyway. I talked a lot to the admin, doctor, care folks, etc..anyone who knew her well and asked for their opinion. Even they were throwing up their hands. I opted for MC and said, “ please tell me if you have any other opinions or better ideas. “ It was awful feeling like I was cooping up my mother - this was truly a case of choosing the least bad of the bad options.
I’d say definitely get an eval , at the least for some peace of mind with decision making. Most likely if your mom is like mine, no matter what she’s going to be super peeved with everything…just prepare for that…sigh….feeling like I was ‘jailing’ my mother was horrible, I could really sympathize. I needed to be told the truth , which was , she was getting the best help possible for the situation. So I pass that message on to you!
I also did something unusual for MC - I stuffed her room to minor excess with lots and lots of pictures and personal Knick knacks . Because she was highish functioning I wanted to give her as much control as possible , and have a big project from the get-go, namely choosing her own things to keep or to move out. This might have helped a little. Usually MC spaces should be more zen but I wanted mom to use her energy for her own purposes.
Fyi she’s now gone way downhill, this MC was the right choice, and she’s MUCH more comfortable and in a clean safe space with lots of attention. It’s the beginning that’s really rough.
You are taking great care of your mom. I am sending you a huge hug and a bringing over a big glass of wine! ( If that’s your thing ) Good luck and here’s another hug
It's the only thing getting me through.
If it became unsafe for ME to care for him at home I would have to place him.
If it became unsafe for HIM for me to care for him at home I would have to place him.
Safety can mean :
Physical safety
Mental safety
Emotional safety.
Luckily I never had to make the choice. I have a house that was built accessible
I got all the equipment that I needed to care for him safely from Hospice
I got the mental, emotional support from friends and Hospice.
He was never aggressive or violent so physical safety from violence was not a problem.
YOU decide what you can and can not do. YOU decide what your "line in the sand" is.
Making a choice to place someone in a facility either Memory Care or Skilled Nursing is not a failure it is accepting that the level of care required to keep this person or yourself safe is more than what can be done at home by 1 or 2 people.
Hiring more caregivers is an option but often more daunting and sometimes more expensive than placing in MC or SNF.
This spring my sister and I started applying to nursing homes. What a s***show. One wanted all her bank account numbers just to apply. Nope. Then it took her doctor's office--now part of big medical outfit--3 months to release her records to NH #2. Never once did doctor's "call center" call to let me know they "needed more information"--bullshit forms/releases they'd never told me about. It was always me following up.
Finally got the DSS in-home eval NH #2 requires.
Again, I had to follow up, this time with NH#2. Oh sure, Admissions says, riffling through her desk, we have a bed. Tomorrow too soon? My head almost exploded. Yes, one day's notice is too soon.
We'd expected mom to have declined more by now. We'd also expected her to have burned through more of her money. So we told NH #2 no. But she's in better shape than we'd anticipated. What we have is still working. To their credit, NH #2 was very understanding.
Now I get a message from aides yesterday that suddenly, mom's having trouble with weakness in her legs. ( She can't walk, but can "help" getting in/out of bed/car/onto commode.)
I'm headed there there now, just a typical Sunday, a 6-hour round trip. Hopefully, it was just a super-busy Friday with a doctor's visit, lunch out. But WTH? Did we mess up by not saying yes to NH? I know there are no "right" answers but...
It is the hardest thing you will ever do but if you can get through transition, it will be better for your mom and for you. I know my stress level and health is much better.
You will be in my prayers.
How much longer can you do this?
Until she is completely out of touch with reality, why not keep her at home and hire help for your own respite. Take some weekend camper trips and leave her in her own regular surroundings with someone providing 24-7 care.
My son and I visited seven facilities before my husband "chose" his favorite continuing care facility. When we began our search, I told my husband what we were doing. I promised him that when we narrowed the list down to the top two, he would choose which facility he moved to. After many tours on the same day of the week at the same time of day, we decided on our top two. I took my husband to lunch at both facilities. Both facilities had excellent staff to resident ratios, lovely suites, delicious food, beautiful grounds, 24-hour RN, on and off-campus activities, etc. Guess what--My husband chose the facility with the friendliest residents, something neither my son nor I considered.
I, too, thought my husband qualified for MC until the facility's counselor performed her assessment in our home. She recommended Level 3, Assisted Living. As time passes, he will move up to MC. Now, my husband has what he calls his "gang." They play games together, they eat together, they go to the movies together, they go shopping together, they exercise together. His best bud reminds my husband when it is time to "dine" in the opulent dining room. He has gained four pounds in the three months. He has a social life, friends, nursing care, mental and physical stimulation, nutritious meals, laundry and housekeeping service. My husband leads a more active social life, eats healthier, sleeps more soundly, plays harder than I do. I am in our house sitting in front of my computer typing this reply to your quandary while my husband is listening to an entertainer in the Rec Room with all his friends and will go to lunch with his friends in an hour and a half.
Note: We have been married 57 years.
You might want to put mom in respite care to give you a break and get mom acquainted with her reality: accepting change takes courage.
Love this : accepting change takes courage!
Her dementia has been evaluated and is mild/moderate, depending on the moment. She's had PT and doesn't ever keep up with it cuz she just doesn't want to do it. Her caregivers get her to do it but complains when I used to try to work with her. So I'm done!
Excellent points. Certainly fear of the unknown can be playing a big part in her reluctance. I'm sure she can't really figure out what it will really be like so that's probably overwhelming, etc.
Take the opportunity if placement is available and if you have all your ducks in a row . Don’t wait for the situation to be perfect because when your are really ready you may not be able to find placement. I speak from experience.
Do you have POA? Is there a trust? Get out all these documents and see if they give you the power to act now. Your mom may not have a choice.
it’s so hard to place our loved ones (regardless of what they think, it’s not our dreams to lock them up) but eventually it happens to most of our families. We are not meant to care for disabled adults alone. The physical, financial, emotional load Is to much for just a single person or family.
When we place our loved ones it does not mean we don’t care, it just means we need a bigger team with appropriate staff and equipment.
Good luck.
You're so right that the perfect situation does not exist.
I have POA and it's activated. I can place her without her permission if I want to.
Good advice.
it is not an easy decision, my mom is not as sharp has some of the other folks in the ALF but can carry a conversation. I think she is the middle somewhere between the two cognitive levels. So, I think, for now, it was the best decision. The fit is very important.
I am in the beginning of the 5th month and she is still adjusting. Hope this helps.