Care Coverage after year is coming to a head

DMB4

Struggling with my siblings to cover care for my mother who has been diagnose with dementia, most likely symptomatic Alzheimer disease.  Guessing she is in the moderate phase of this disease.  

My sisters and I are not even talking, this disease has driven a wedge between all of us and we are not able to talk and coordinate care for our mother at this point.  I have tried to pull everyone together (haven't really had a good experience on the phone together, lots of yelling and hanging up) but I guess they just think if we don't talk about it, we can keep doing what we have been doing for the last year.  Each of us takes turns from 7pm -7pm.  And days have been picked over text or email.  Frustrating because one sister is saying she can only help Monday or Tuesdays each week.  Well last I checked there is 30 or 31 days in a month and 4 days for one of 4 siblings doesn't work out so well.  Leaves a lot of uncovered days.

We don't really have a good way to decide a schedule because most of the coverage schedule was picked over text or email.  Looking for any ideas to help make this as fair an equitable as possible but I don't think it will matter as I know at least one of my siblings are putting their foot down on the time they will help - using the job as the reason - not sure I believe this because I have a full time job too.  We can't even have a conversation to see if there is potentially options which could work for all of us.  We have folks who don't want to put in a memory care facility and also don't want people coming in her home to help us.  We are at a deadlock.  It's not sustainable but some believe it is our duty as daughters.  That's all great in theory but the reality is not everyone is on the same page.  Something has to give!

We are all very frustrated and concerned for our mother but we are not doing her any good because our efforts are not coordinated.  I hate she is having to go through this - it was her biggest fear because her mother went through this same thing.  I don't have my mother or my sisters anymore and I really don't have a clue what to do!  

I'd just like for my mother to have a stress free, comfortable, stimulating, safe and consistent environment for the balance of her life.  She deserves it!

Open to any suggestions or ideas from anyone!  Thanks for letting me vent!

Rescue mom

The common response here is that if they are not there to help with regular caregiving, they don’t get a say. If they don’t want a facility and don’t want aides coming in, then they have to handle it. They won’t? Then they have no position to say. They are clueless about what’s needed. 

You did not mention who has POA or DPOA, that’s a huge factor in deciding. The person with one of those should be moving for placement in a facility, if family can’t handle everything (as you indicate). Those unable or unwilling to help, have to recognize she needs help, if not from them, then somebody else. Honestly, in a good facility, there would be caregivers 24/7. Many PWDs do better there.

Cynbar

Hopefully one of you has DPOA ----- that should be the person in charge of decision making. . For the record, this is a tremendous amount to ask of 4 sisters, covering 24/7 care. If you are looking for advice on how to convince the reluctant ones to pitch in more, it's not going to happen without a lot of hard feelings.  I don't doubt that you are on different pages, have different amounts of time and commitment to give. Some of you may have more financial concerns and need to work, some may have more responsibilities with your own families. Who made the decision to keep your mother home with only the 4 of you caring for her? If she has any funds, those should be used towards care. If she doesn't, look into Medicaid which could pay for placement or provide some in-home help. But I think it's unrealistic to expect all of you to be on the same page. I really think it's time either for placement or to get some outside help in, and drop resentment against any of you who can't do as much as the others. If not, your relationship will not recover. Are you willing to take that chance?

dayn2nite2

Pretty much, if you can't get everyone to pitch in directly caring in an equitable way, Option B would be for them to PAY for care.  If they refuse, then you have no choice but to look for placement.

Bottom line is you can't force someone to do an equal amount or force them to pay instead.  Family pressure can sometimes effect a change on the more difficult ones, but often there are some people where Option A and Option B are refused and they have nothing more to offer.  In that case, you're left with picking up the slack yourself or placing her.

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harshedbuzz

This plan is not sustainable for the long term unless everyone is bought in and can pull their own weight. I've known a few folks who did this for a parent in hospice who had weeks to live and even that was a challenge.

And, TBH, having 4 different untrained siblings doing their own thing with mom and then disappearing is not an idea situation for a PWD.

I see 2 options.

Either the DPOA makes the decision to move mom to a MCF or her own home and every one else defers. Or you all sit down with a GCM who has experience working with families like yours to come up with a compromise which works for all of you. 

I am always suspicious of those who don't want to spend for professional care- mom's assets should be used to take care of mom not held back to fund a more generous inheritance. 

HB

Quilting brings calm

I think the siblings need to understand that not everyone is cut out to be a live in caregiver.  Nor is everyone cut out to do it for several days a month.  For a person working Monday thru Friday, your family is expecting them to devote  every weekend to this effort.  Or are expecting them to use 8 vacation or sick days a month  to take weekday caregiver shifts.    The reality is that people have homes  and lawns to maintain, groceries to buy, children to spend time with. Children don’t  freeze in suspended animation for the number of years it takes to care for a PWD.  They have baseball and soccer games, Scout camping weekends, homework.  They deserve their parents time. 

My parents live in assisted living after we moved them back to our state in Oct 2019. I spent 2.5 weeks total( there, getting them moved, and attending to an inconsolable  sundowning LO in the hospital for a week when we got them back). FMLA saved my job.  But I eventually retired in December  2020 because I could never predict if I was going to be at work a full week on any given week. The fact that I have a spouse and an adult son with medical issues didn’t help that. 

I think your family is unrealistic in their expectations.  If you place your LO and then divide what needs to be done, you will be better off.  One person does shopping, one does doctor visits, one pays the bills( and shows another the checkbook).  One person is on call on rotating weekends so the others can leave town or attend a ball game, etc.  I don’t have any help right now.  I was at the ASL 3 days last week- once for a doctor visit ( half a day),   and twice for imaginary slight medical issues (her tummy hurt,  her toe hurt and is it infected?).  Plus multiple phone calls every day.  The last one was to reassure her they could just ignore the  scam robocalls.  

MN Chickadee

Many chapters of the Alzheimers Association have social workers who can sit down with families to talk productively and figure out care needs and expectations. Call your local chapter and see if they do care consults for families. I know multiple people who have had family members with differing views on care, finances, and responsibilities who found this very helpful. You need to be able to speak honestly and civilly about expectations and outcomes and also have realistic and accurate understanding of the disease progression mom will have. I would recommend you utilize a professional to facilitate, either through the Alz Assoc or someone you hire privately like a professional geriatric care manager. Is one of you DPOA? If not this stands to get quite messy and you will likely need an attorney who practices in elder law.

King Boo

Things are coming to a head because your current model of care is not sustainable.  Everyone is maxed out, and Mom's care needs keep on coming and increasing.  As they will until her death.

Having a full time job is not an excuse.  It is a demand on your time, and one that must be maintained.  Some positions are more flexble than others.  Add in your own family friends and self care time.  

Regardless, 24/7 care of a PWD can take an elephant down.  Marriages have ended, sibling stressors are not uncommon, but finger pointing gets little done.  May I point out that a facility has 3 shifts of trained staff to provide care?  

The sooner that everyone gets rid of the idea that their sibling is a horrible person for not doing things the way another sibling thinks they should - you will be moving a positive direction.

WWID?

1. Immediately look into hiring care in the home.

2.  Evaluate what a feasible, much lighter schedule is for all of you.

3. Visit and determine where Mom can go for respite services.

4.  Visit many facilities and determine where you would place for Memory Care and skilled nursing.  Evaluate their admission proceedures.   Plan B and Plan C.

5.  If  you have not seen a CELA, do so www.nelf.org

6  Execute a Family Caregiver's agreement

Be open to other models of care.   My LO thrived in a carefully chosen placement, contrary to my siblings insistance he preferred home, where wandering, two broken hips, and malnutrition occured.

This stuff is not easy.

Dykey

My husband has ALZ and is diabetic. I have cared for him for the past two years but now thinking of moving out of our home to an assisted living facility where eventually transition to MC. 

My son and DIL who live in another state would like us to move to be closer to them and our grandchildren. They feel they would be able to see us more often and provide more support. I am in favor of moving provided I can find a home that provides comparable care and community activities for both of us. 

My concern is that my two adult stepdaughters live here and they would be separated from their father. They really provide no care. They visit on his birthday, Father’s Day, and Christmas, and call occasionally. He is not very communicative so conversation is difficult. 

In my own mind the benefit I would receive from being able to see my grandchildren more often outweighs their separation from him since they are not helping to care for him. 

I am interested in any thoughts others may have. 

Dykey

Stuck in the middle

Dykey, I would move to be near the son and grandchildren.  The stepchildren will not miss you.  As you said, they seldom visit now, and they can call as easily across country as across town.  After your husband is gone, you will probably never see them again.  Your son and grandchildren, however, will be there for you.

I have tried to prepare myself to be widowed one day.  I suggest you do the same.  You need to organize your life so that you will be OK, while still taking care of your husband.

BTW you will get more responses if you start a new topic so your question is seen by more people.  Just click on the "Add Post" button near the top of the page.

harshedbuzz

Dykey-

Hi and welcome. As SitM suggested, it's best to start a new thread to ask a question as more people will open it compared to one that's a day or two old.

That said, if you are thinking of moving I would do so asap. With dementia, the window for the physical challenges of moving could close quickly with the progression of the disease or a medical event like a fall.

I moved my parents closer to me when dad was first diagnosed. I say "I" because I was the one who oversaw the logistics of the moves because dad wasn't bought in and would fight it and mom was busy being his caregiver. Some tips.

1. It's best to move the PWD to the new home and stage/sell the house once they're out of it. My parents had 2 house, we listed the primary one and rented the other during the season. Acting as POA for them both, I handled the properties leaning heavily on the Realtors to get the house ready for sale.

2. Create a new medical team and have records sent. I lined my parents up with the biggest hospital system near me and found most of their specialists within that network  initially. It's a good idea to get copies of any imaging studies done as the new docs will want baselines for things like mammography.

3. It sounds like you may be interested in a CCRC with you in an independent living apartment/cottage and your DH eventually in MC. When touring, I would go alone or with your son and insist on seeing IL, AL, MCF and SNF/rehab. IME, sometimes different departments in these facilities are stronger than others. One place near me has a vibrant IL community but a ghastly rehab/SNF. A few places claim to offer MC, but it's really just personal care or the SNF and training is non-existent. Another's Al is so bad I wouldn't kennel a dog there, but their onsite hospice services are top notch. 

Another concern is that many CCRCs operate on a business model balancing buy-in fees and level of care. At such places, there may be the assumption a couple wouldn't be needing assistance for several years. I dearly wanted to move my parents to one near me, but they do a cognitive screening on prospective residents and I am certain dad would not have passed. 

4. You say you are considering AL at some point. There's an old saw around these parts, by the time a family is considering assisted living, that cruise has already sailed. A lot of people don't realize the degree to which they support and scaffold for their PWD and are shocked when a hospitality model AL doesn't work out. Another common scenario is when a facility that offers both, will accept a resident in AL with the expectation that it won't work out and they'll insist the family transfer to MC. 

In my own family, an aunt went to AL when MC was the appropriate level of care. She wasn't able to turn up at meal times. When a family member did escort her to meals or an activity, it is clear how poor the fit was. My aunt didn't have the cognition to participate in the activities and was shunned at meals for being unfiltered. A few of the residents were quite resentful to have had a PWD included in their little club and were quite unkind to her.

In considering the move, I would explore what "support" means to you and your son. I did a lot for my parents- basically they took over my life in 2017. I don't work and my only child is an adult so I do have the time. My mom doesn't really have any friends locally (Covid kind of aborted any progress I was making getting her to connect in her lovely 55+ community)  and her grandchildren aren't little any more and too busy to go to Nana's for the day, so I have a lot of responsibility for not just looking after her but also entertaining her as well. I'm glad she moved because she is safer and less isolated here but it's not been a perfect solution.

HB