Hi everyone, still 6 years now into taking care of mother without family support. They don't believe she has "dementia" and have taken a back seat even with demonstrating a level of concern about her. We all live in different cities with health issues and family issues. How should I approach this conversation without being accusatory, or should I just listen to their ideas about how the care for Mom can be more shared in spite of Covid's presence. I had to stop in-home care and just use caregivers for running errands outside the home. This puts more pressure on me to do all household cleaning, financial
maintenance and attending to Mom who is very stubborn, selfish, and inconsiderate towards my care and safety instructions, and this wears down my will to continue on. Help, I need a respite if I'm going to continue this alone.
You have heart issues and sickle cell. You have enough health issues on your plate that you should be taking care of instead of catering to a selfish and inconsiderate person, even if she is your mother.
You;re a social worker; what would advise a client to do in this situation ?
Stop trying to convince folks that you're right. Set a date when you stop care (October 1st sound right) and move on to taking care of yourself.
Either the rest of the family will step in and discover for themselves that mom has dementia and/or they will move her to a care facility.
You will have to calmly state that you cannot do this anymore. Setting an end date is a good idea. If they think Mom is not as bad off, they shouldn’t mind taking care of her. Piece of cake (not)! Let thrm
see for themselves.
Is it on Zoom, surely not in person given your separate living areas? Do any of them live nearby you, and are they able to help with any hands on realistically?
I will tell you just on the face of it that given you have NEVER had much support from them, I think it is realistic to know that you will NOT. Being adversarial then will kick up all their DEFENSES and send them into their CORNERS where they will not hear a single thing you say.
So, I am saying you are RIGHT ON. You have it. Listen to their ideas. Open with "I would appreciate any ideas you can give me going forward; I don't know how long I can maintain care in the home; it may not be much longer. I need help I cannot now afford to get financially or in risk (Covid-19) control. I sure would appreciate any ideas you can give me". Then take notes. Listen. Don't respond much other than "I thank you for your input".
You say that no one recognizes that Mom has any deficits. Therefore I would attempt to get a letter from her MD enumerating her basic level. Short and sweet. Read it first.
As you said, it is TRUTH that you don't know how much longer you can do this. I surely am with you on that as I wouldn't have made it a WEEK. Whatever you have done, it was heroic. Don't let it kill you.
Don't let it descend into anger. Stay calm and quiet and gentle and let their own GUILT eat away at them. I hate the word guilt. There are some times it is earned, however.
1. The doctor’s letter is crucial, but perhaps you can back that up with some evidence. Can you take a few phone videos of your mother and her reaction to something that shows her memory loss, other dementia traits, and the behavior that you find difficult? Your siblings aren’t seeing her, and many people with dementia can show-time when talking on the phone, quite convincingly.
2. How are you paying for all this, carers etc? How does the cost stack up to your income? Start keeping a record of what and how much you are spending. You need facts and figures that can’t be argued with.
3. You need to re-think your Profile comment that ‘I don't know how I can get more assistance now that I know she fears nursing home and memory loss is getting worse’. Memory loss continues to get worse, not better. Virtually no-one ever wants to go to a nursing home, and many if not most parents fight tooth and nail against it. Even people who were quite happy with the idea when in their 60s, are strongly anti 20 years later. The reason it has to happen is that intensive round-the-clock care simply cannot be done by one person. Start looking at facilities yourself, and get some cost estimates. Stop thinking that it can’t happen because your mother doesn’t want it. Put it on the table as an option for the family to consider, unless you get more help.
If you can get through the Family Meeting without losing your cool, and get some practical positives out of it, great! If your cool starts heating up, perhaps you terminate the Meeting. In any case, sooner or later you will almost certainly have to consider the next steps. Good luck!
Be happy,,, family .. gathering at moms home in her surroundings, and her lifestyle, and a good ole family POTLUCK :) Make if fun, joyful, mom's music, laughter, and see how everything goes..... If someone does not show up at time of festivities, let it be known, they are not allowed to put the 2 cents in...
So, if You think mom needs to get more care... then, show them, and tell them, THE BOTH OF YOU NEED HELP TO KEEP MOM HEALTHY, STRONG, AND COGNITIVE, AND SOCIAL !!! And you will joyfully accept it :)
Are you the youngest of your siblings?
about 4 of my friends are the youngest in their families, and were blessed with this honor of taking care of their parents.
I don't know why, but it is a pattern in my circle...
how old is mom? if she cannot take care of herself,,, and she is not able to walk, or stand, or maintain her meds, then she needs someone to step in and help her with health...seems like it is you, and she needs to cooperate with you...
this covid thing is just getting on my nerves, and everyone else... my kid is starting a new job..at target... up Target... how manyh people go to Target? What is the chance of us parents getting COVID vs a DISCOUNT AT TARGET? I told SPOUSE... IF kid gets covid FROM working at Target... WE, AS A FAMILY, MAY GET COVID... WE ALL GET OR GO DOWN WITH COVID......END OF STORY,,,,, I HAVE MY DNR.... AND POLST......... I will take 3 sequences of Z-PACs if I GET IT. A friend told me that is what he and his wife did... 3 sessions of Z PACS..That was before COVID was announced, but it was the worst FLU his family endured. I will not give my family a MEDICAL BILL OF 1.1 MILLION DOLLARS TO BE PLACED ON A VENTILATOR... THAT IS JUST FEATHER PLUCKING INSANE!!!! I think insurance paid for most of it... but seriously? nahhh... I will not get covid... I refuse.,,,especially at that price...
I WILL NOT BE PUT ON A VENTILATOR.
GN SWEET DREAMS...
It doesn’t matter whether Mom spits in your face or treats you like royalty. Dementia tints every single aspect of her life and your care for her. If HER activities include dangerous and self defeating behaviors, she NEEDS caring intervention from the person(s) legally responsible for her.
Her SAFETY overrides every subjective assertion of her personal desires, ESPECIALLY as an individual suffering continuous progressive cognitive loss.
You may wish to have a professional geriatric assessment administered as a source for a document defining objectively her psychological and cognitive status at present, and possibly medical interventions to be considered that may temporarily make her safety management more possible.
You have an important responsibility TO YOURSELF as well. No decision making on your mother’s behalf should be made without bearing in mind the relative consequences to YOUR HEALTH. The balance between your mother’s care and YOURS may not make for absolute joy for all concerned, but geriatric care is often, perhaps almost always, making choices between less than perfect solutions.
Stay well.
Do NOT have mom at this meeting.
However the weekly zoom calls are a nice family time. Grandkids will sign on intermittently and usually all the siblings. We get caught up on everyone's lives. Mom really looks forward to them.
I did spend more time with our mother, usually on the phone and it was obvious to me that something was not right. Even after OB acknowledged it (once/week calls on Sunday, which were not very long) he disputed information I would send to him. YB was even more insistent that she wasn't that bad off... When we were in the process of choosing a place and talking with staff, he kept insisting that she would prefer AL. The only good news was the staff members negated that idea! What is somewhat amusing is hearing him say why - she wouldn't want to be in with a bunch of old farts! Really? Have you ever looked at those in AL? Most are older (she was already over 90, older than many of them!) and many had walkers and wheelchairs. Although there are walkers and wheelchairs in MC as well, many of the residents did NOT have them and several were even younger than me!
If you don't get a call within a week, call each one of them and see what they think.
You should also have a talk with your mom to let her know what is going on and how you feel and what you need from her.
You might need to hire a Live In to helo Care for your mom.
If your mim has any assets, you may talk to her about selling so she can pay for her help.
Are any of them willing to take her into their home for a month? Even if it means a week in one house, a week in another, etc - so you can have a break and remain in your own home to get personal things done. If no one willing to step up to the plate, then you will be looking at some temporary respite care at a facility (and go ahead and check some out so you have prices to give them). If mom has the money, plan to use her money. If she has no money, the siblings will need to split the price of this care since you've already contributed your share up to now.
If no one willing to take her in or pay for facility care - then tell them you just wanted to ask them all first and now you'll make the decision. And, if anyone has any better idea on how to get her out of your house for a month, you are willing to listen (and be sure to have an open mind to other suggestions as long as the result is the same). The goal is to give you a real break to do whatever you want so that is the reason to move mom and not move you out of your own house. And a month is minimum - you really need at least that amount of time to refresh. If the conversation sounds promising then you can also add that moving forward to avoid burn out, you will need some kind of relief several times a year. Even people who have a job get vacation time to refresh. So, 2 months a year is not much to ask when you are providing in home care. If they get a taste of it, they may have more empathy for what you do all the time . Good luck, but don't expect much from people who don't step up to the plate on their own.
You may also want to consider in home care again. Stipulation is mask, gloves and extra hand washing while in the home. Make sure to have plenty of those supplies on hand. These workers don't want to get it any more than you want them to share it. They don't want to get sick, make their families sick, and they want to earn a living. They are taking extra precautions and I think the risk now is much lower than in the beginning.
Even after acknowledging there was an issue, they still didn't get the full scope. They also didn't listen to me (I knew nothing about dementia when I noticed the changes and did my research - tried to share info with them, but one flat out denied, the other called me a know-it-all!)
It certainly can't hurt to try to get the others on board. Personally I wouldn't hold my breath, but you never know. In our case, one brother isn't local, so is no help and because he never lost his abusive nature from childhood, I am done with him. The other at this point begrudgingly takes her to Mac Deg appts 4x/year and complains to no end about it and tries to get out of it! I can't support her weight now and she won't stand/walk w/out help. The treatment place is outside the facility transport area and there are none local, so I have to rely on him for this. Once she passes, I'm done with him too (not as abusive as the other, but I can do w/out his crap!)
Hopefully you can get them on board, but if not, what is the backup plan? Does anyone have POAs? If not, it *might* be possible to get this done - it all depends on how far down the dementia path she is. Our mother was in the early stages, but the EC atty talked with her and was satisfied that she understood enough to sign documents (we did already have POAs in place, before dad passed, but needed to set up other legal documents regarding her finances, condo, trust, etc.) If no one has POA, and you think she might be able to pass snuff, RUN, don't walk, to an EC atty to get all the legal issues taken care of. If she can't pass the check, it might require getting guardianship.
Does she have income and any assets? If yes, these should be used for her care. I understand the need to reduce interaction w/ others, given the virus and medical issues for both of you. If she has no assets and limited income, Medicaid might be able to help. Some states will allow Medicaid assistance for help in the home (unclear if it would apply to running errands for you vs hands-on care. Sometimes Medicaid can pay you or other family to provide that care (not likely full time, but anything helps!) It likely would be considered income that has to be claimed, but every little bit helps!
While there are less AL/MC places that accept Medicaid, you might be able to find some that are acceptable. It doesn't always have to be NH. Our mother is in a private pay facility that has IL/AL/MC. Your mother has other medical issues that might require NH vs MC, but there are NHs that have MC units.
You DO have to consider your own health issues. If you don't take care of yourself and/or something happens to you, what then for your mother? Two of us do have POA, all 3 are trustees for the trust, but neither of them take ANY interest in what I do. There is a LOT more to it than just paying the bill at the facility! YB doesn't think so - he actually said "They take care of everything." to me... No, they don't. I have to pay the bill, but that requires ensuring there are enough funds, adjusting the funds fed in from the trust to cover other necessities, keeping track of supplies not provided (briefs, wipes, personal care items, medications, etc), ordering them, buying them, keeping up with medical and dental treatments, etc. Visiting before shutdown (had a recent visit, but with restrictions that was a joke.)
Do what is best for YOU and your mom
And, you need a rest. I was sole custody of my husband, and when I joined a caregiver support group it helped me take care of him better, understand what he needed or wanted, or said, and how it would affect me and our lives. After a few years I called in a caregiver for 4 hours when I wanted to attend this meeting, and had enough time to even grab a bit of lunch or shopping while out. What a relief. Yes, you have to pay for the caregiver, but it's worth it. I saved my invoices from the company and was able to take the cost off income taxes (before the tax system changed). If your Mom has long term care insurance, save invoices, they add up towards "elimination period" which is usually 30 days up to 3 months, depending on the company.
Another thing that has not been mentioned here is using Adult Day Care. I started out with one day 4 hour, for 2 times a week, then increased it to another day, then another for 3-4 times a week. This is where you get the doctor to agree to provide you with authority to use his/her funds by a ltr that Mom or Dad cannot handle affairs and you need a rest. This helped me keep my own medical appointments, get a hair cut, go to a meeting, or just do some housework. At his stage, he didn't like it, but didn't know where he was. He spent a lot of time looking out the windows for me. Adult Day care can be used for the Elimination period and is considered 1 day elimination even if the person is there for a few hours at a time. Also tax deductible if not paid for out of LTC policy. Some YMCA has partnered with senior activities, called YOPAS--YOPS Outreach Program for Seniors which have volunteers for caregiving respite. Some cities have this, but there are other volunteer services that may be able help you to get out of the house for yourself. Check with your Area on Aging Coordinator for your county, it may be called another name, but all US counties have this. There are volunteer programs from churches, etc, that can sit with your Dad or Mom for a few hours. And, begin more discussions with evidence with your siblings or family members who are not understanding the situations. When I couldn't handle much more, I typed a list of issues that substantiated my reasoning for putting my husband in assisted living. I called a meeting with the Coordinator of our Area On Aging organization of the County where we lived. My son got this list before the meeting. The coordinator explained the reasons by the list of activities my husband was not functioning well, and made my son believe I was overworked and not paid, no time out, no time off, and just plain tired. My son finally agreed it was time for assisted living. This took 4 years!!! But keep trying whatever you can to get some relief and funds to keep your Mom or Dad safe and cared for. A $20 birthday, mother's day, father's day gift, Christmas gift of money goes for 1 hour of caregiver visit. Call meeting, give siblings info on what $$ you need, and get the funds or have invoice sent to them. But,get the rest you need and take care of your own health.