My mother is 62, and unfortunately due to her exit seeking behavior she is not a candidate for AL. I have found a MC facility that accepts Medicaid and has an available bed.
Her MLTC case manger, her social worker, and medical team have been trying to get me to rethink MC given her age she is 65 and how active she is they feel memory care will limit her quality of life since her needs can be met in the community. Issue is Medicaid is being stingy with homecare hours, and it legit is not safe for her to be alone.
I feel as if people are making me out to be a monster. I am an only child and work sometimes upwards of 80 hour weeks. I cannot focus on work and my mother. I am a chemical engineer at my age requesting a lighter work load is career suicide.
Any suggestions as to what I should do? Should I follow medical advise and waif to place my mom?
You said not working less the eighty hours a week would be career suicide. You don't want to damage your career. However, I'm wondering how is this actually working for you. Do you have any time for yourself?
Correction sorry did not see I put 65, she is 62.
institutional setting care. Usually, that is a less expensive option and the one the patient prefers. It’s not the case in your situation. Are you sure AL is out of the question? If so, hold your ground about not being able to be her primary caregiver. If she meets the criteria for memory care then Medicaid can approve 24/7 in home coverage or facility care. This is for your mom’s safety and yours too. You are not a monster.
Your mom, should she actually make an exit, is in MORE and not less danger, because she's exit-seeking, and when she DOES get out to the streets she'll not be seen as an elder with dementia but as a drunk or crazy person; and she'll be ignored and in grave danger.
Early onset is hideous and it is sad, but it is there and your mother has it. And she isn't going to live to her 80s. And her mind is gone to the extent that activity for her body is at this point meaningless. There's no point to keep her body healthy and active. Why? For what reason when there is no mind left and our minds are us? To prolong her torment? More doctors and social workers need to be told that it is cruel to make attempts to keep people in your mom's state alive; that there are many things worse than death and one of them is being robbed of your mind and of all you are. The next is being forced to live that out endlessly like a bad dream that never stops.
As to what others think? Next opinions you get from people who feel they simply MUST tell you their own or overheard opinions, do tell them to come see you when their elder has early onset dementia. You can tell them you'll have a lovely talk over tea at that time.
Because of aging population and increasing populations with dementia we are seeing some changes. My brother's So Cal ALF 5 years ago began intermediate care cottages with more staff and locked doors, but still with private rooms and more like ALF than MC. But the fact is that exit-seeking and early onset dementia has more to it than exit seeking, and more staff is needed. Soon there will be incontinence and other factors. The need to be fed for instance.
If you found care on Medicaid for your poor mom then good on you.
Stick to the Forum where you'll see people dealing with what you are dealing with, and tell the persons with all their good advice that you participate in a "support group" with people dealing with what you are dealing with, and depend upon them as they are more "in the know" than others who happily are not where you are.
I so wish you good luck. I am so sorry. I am so thankful your mom has your support.
That a "care team" would not prioritize safety.
I would also like to think that a facility KNOWING of her exit seeking would NOT admit her as a resident in AL but insist on MC.
So...lets play this game...
You follow their suggestion and place mom in AL not in MC. One night she decides to go to the store to get a box of cookies and either gets lost, and wanders until she freezes to death or gets hit by a car.
You are the one that is plagued by "guilt" because you followed their suggestion.
They write it up and close the case on a "tragedy"
The facility is investigated because they admitted a resident into AL when they should have been in MC.
Go with what you think is right and the "care team" can document that they have suggested Al but you have chosen MC.
Better to be safe than sorry.
SW cannot guarentee an aide won't show up. That Mom is safe in her home. Really, she is at home with an aide. MC there should be activities and socialization. I am not big on SWs. My experience has not been good. Get that Medicaid application started. Sorry, buts its not all about Mom anymore. You are young and need to take in consideration your limits and needs too. 65 is young for Dementia and may advance quickly. Enjoy your Mom by being the child who visits not the one who gets burnt out being a caregiver.
This team should be there to guide you jot tell you whatvyour going to do.
and by community, they mean you — and in reality, only you.
Tell them no and just keep saying no.
Also, how is her MC going to be paid for? Not by you, I hope? Hopefully Medicaid will be paying for it? If I were in your shoes I'd place her asap so that you can resume your life and not have to worry about where your Mom is and what she's doing, or if the Medicaid in-home aids showed up, etc.
Dementia is a lose lose situation for all concerned. You cannot care for mother at home nor is it safe. The social service people are liars and not living the nightmare THEMSELVES. Just giving false promises of More Help At Home and yada yada. What do YOU do when The Help doesn't show up last minute? Or mom is having a blowout at 2am when you should be sleeping? Or she's up wandering and trying to get out of the house or cook at 3am?
Place your mother. Its the best of a bad situation, which is all you can expect with dementia. You'll be sad, she'll be sad, and everyone will cry. But she will be safe and fed and accounted for 24/7. You can visit her to your hearts content and keep her stocked up on her favorite snacks and pretty blouses.
Don't torture yourself over making the only wise decision you CAN make here. I'm sorry you, me, and millions of others are or were or will be faced with such dreadful decisions now and in the future. I hate dementia with every ounce of my being.
Your mission is to get her where she needs to be, to be safe. Otherwise the State does it. You are young and frustrated with the system. Her medical team is playing you like a fiddle. You have various medical "professionals" giving you WEAK advice. They feel "memory care will limit her quality of life"...yet what about YOURS? How has "the Community" helped you so far? Their priority should be her safety! You already found a place you like available, and they have the nerve to attempt to stall her placement? What are they thinking?
You have no other help or siblings, so time to get firm about placement. Repeat these 2 facts as needed:
1. She is not safe alone at home, period.
2. You cannot be her 24/7 caregiver with your demanding job.
You are smart enough to know this is not a pleasant situation, but is required for Mom's safety. You are not a monster, and resent the insinuation that you are. You did not cause Mom's decline. What is so damn bad about placing Mom where she will have 24/7 care, be fed, kept clean and safe? She will be around other people, have activities, socialize, and her wandering behavior be prevented. You can advocate for her, instead of worry and stress out constantly.
The reality is caregiving your "active" Mom is a 24/7 job. She will only get worse. Wandering is extremely dangerous, and they all know it. Memory Care is not an insane asylum, it is a controlled care situation. She will be kept safe from wandering the streets, possibly getting abducted, or hit by a car. I've read numerous stories here, such as elder Mom was found a mile away on a winter night in their nightgown, shivering with hypothermia. You are calling police when you find her missing, you cannot concentrate on your living you need to earn, the stress is incredible. All these people want to do is guilt you with her caregiving and move on! It annoys me they all know better.
Don't buy the "her quality of life will suffer" speech. What about your quality of life? You are not placing Mom in prison. Get your argument ready, and stick to it. Nobody wins with dementia. Not your fault whatsoever. The goal is to keep Mom safe, or she won't have any quality of life!
Let them know you are also a professional in your field, and you aren't allowing them to guilt you or manipulate you into not placing your Mom. You expect them to do their jobs and assist with the Medicaid paperwork. Call a meeting to save time. You aren't going to allow further stalling on her placement.
You will be her #1 advocate, not her stressed out personal caregiver. Don't let their emotional blackmail interfere with this mission. YOU GOT THIS.
And, you do also have to be mindful of your present and your future. The only way you could realistically provide your mom with the case she needs would likely be to quit your job. Without a job, how would you pay for your expenses, your healthcare, and your retirement? Sacrificing those things won't reverse the progression of your mom's disease.
Care teams will rarely prioritize caregiver well-being. You need to prioritize it in a way that respects your needs and your mom's. You could, for example, place her in a MC facility where she will likely be safer than unsupervised at home and visit her as often as you can and spend as much time as you can with her working on preserving her activity level.
Good luck!
Do not let them make you believe community mediciad is going to provide the care your mother needs. You absolutely can not rely on community mediciad in this situation. There are too many call outs or no shows due to short staffing and crap pay.
Yes, MC is the only option. It's not a 'maybe?' situation.
A friend of mine just went through this with her mother. Mother lived alone, kept insisting she was fine and would not let any sitter or hired caregiver in her house. Children could not care for her 24/7 as they all have younger children. That, and she was slapping her kids, the cops, anyone who tried to help her. Was giving her money away to a leech boyfriend. Had to stop driving because she smashed her car into a light pole. Scariest part was she'd walk around her neighborhood in 90-degree heat, forget where she was, and walk up a busy street. She got into several strangers' cars (with lots of cash in her pockets) and thankfully they were all decent people who took her to the ER.
After almost 2 years of this, her children got her into AL. It did not go well. AL could not make her stay in the building during the day. All they could do was call her daughter and tell her mom's on the run again. They hired a sitter and mom would yell and hit them. That, and daily sitters would cost $16,000 A MONTH!
Mom is now in MC. She doesn't like it, but it is a great place, very clean, with attentive staff and lots of activities. She's safe from wandering and MC has doctors on staff to help with her severe anxiety. This has helped tremendously and stopped the violent behavior. Her children can relax a little knowing she's well cared for and safe.
Is she aware that she is a flight risk? If not, depending upon her personality, you might want to share with her, that she is a flight risk and see what she thinks. If the issue is that she just cannot find her way back home and she is aware of it, would she be willing and remember to wear a "wearable device" (e,g, watch or phone) so that she can call someone if she becomes confused as to how to return home?
Is your Mom relatively mentally healthy other than her exit seeking behavior? That is so tough because most of the MC facilities have people who are much further along in their dementia than your Mom appears to be.
I don't know if this is possible. See if you can find a "group home" Where I live these are clusters of small buildings that have 24 x 7 staff, in a gated community. They usually have 8-10 people in a building. There are also some MCs where the people are more "able" than others. There are also some ALs that have manned entries 24 x 7. The problem is that I don't know if these accept Medicaid or only private pay.
Either way, you are in a difficult position. I wish you a lot of luck in your quest. Your Mom is lucky to have you.
Either way still in the process to get her placed. It appears it should be done sometime in January.