I don't understand this.

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Phoenix1966

I’m sorry you feel so conflicted when all you want to do is live your own life and have your dad do the right things with your mom. A perfectly fair wish. Unfortunately, your dad is incapable, for whatever reason, to do it. And here you are.

I can sympathize with wanting to be there for your mom, who needs help, but as others have mentioned, you are providing the scaffolding for your dad to keep plugging along in the manner he’s been. I think you perhaps mentioned that he does leave her alone for periods of time to do his own thing. If that is the case, then your mother could be in trouble during that time. Just because she hasn’t forgotten how to use the stove correctly or go outside wandering up to now doesn’t mean she won’t at the drop of a hat. Symptoms can change and progress at varying rates.

I had to deal with my grandmother during her dementia journey. I will be frank and say she was a horrible person. She was abusive to my mom when my mom was growing up and careless with me when she took care of me during the summers. Her dementia made her even more horrible after my grandfather died(her scaffolding person) and eventually she had alienated the few friends she had left. At the end of the day, it fell on me to get her help because no one should live in the manner she was. Her hoarding escalated to stage 5 at this point and, while I was named her POA, the military base that issued the papers only issued one copy and she held on to them, so my hands were tied. She never drove and had to rely on others for any errands, doctor’s visits, shopping, etc. I was the last person she had. And, like she had with everyone else, she eventually accused me of a kind of theft(a common theme, it seems, can be to accuse your loved ones of stealing the thing they cannot find) and threatened to call the police(she had already done this to my mother for the theft of all her extension cords-yes, really). I beat her to the punch and stood in her driveway and called them myself. I figured when they saw the state of her home and listened to her accusing me of stealing her military ID and replacing it with a forgery(“That can’t be me…look how terrible the picture is”), they would help. They couldn’t.

I then called APS because I figured they would not let a woman live in those horrible conditions(stuff stacked floor to ceiling, rotting boxes of vegetables, dog feces everywhere and maggots in her fridge). They did nothing. I was at my wit’s end.

In the end, I walked away and waited for the inevitable crisis. And it did come a month later. She fell, couldn’t get up and had no way for anyone to get it(she kept promising to give me a key, but always changed her mind because I would probably steal something). I had to call the fire department to get her out. They literally had to bodysurf over piles of junk to get to her and they were the ones who helped me help her. They had her taken to the hospital and told me to tell the hospital there was “no safe discharge plan in place” and she could not go home. While she was in the hospital, I managed to find the legal papers and it was eventually from a hospital stay that I was able to have her transferred to a memory care facility I had picked out.

It may not work for you, but as others have mentioned, it may be the eventual crisis that will help facilitate getting her the care she needs(not what she or your distant sister may want). I would let your dad take her to the ER the next time he claims she’s having a meltdown. But that is just my opinion and I’m not the one walking in your shoes. It took me a long time to be able to be the “parent” for the authority figures of my youth.

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TrumpetSwan

Hi Emily. Sounds like you have received some great replies. When I first read your post what came to mind was how beneficial it must be to at least be on the same page with your dad about your mother's health condition. It seems to me it is common for the spouse to try to cover up the illness out of fear someone will "take them away", and it can go unacknowledged for quite a while. In the process, others become depleted picking up the pieces that just continue to unravel.

With this disease, it seems it does always change. It seems difficult to get in front of. Just when you feel a bit of relief about putting something new in place, you realize a new aspect and it repeats again.

At least you know what you are facing with the illness which I would think would be helpful to ground you as you decide your next steps.

I think having a couple of Plan B's in mind are good as suggested here about how to move your mom to MC. It may be unlikely you will ever get your mom's approval in advance, or be able to tour of a few communities and arrive at joint consensus. Maybe in the back of your mind have a few preferred communities already chosen as your 'go to' when the moment arrives.

As for how to help your dad manage this challenging situation, I think you have done well to suggest what you have and it is his option whether to use what is available. It is up to him to actually follow through. I offered same to my dad and he never did one thing. It was exasperating to see him struggle and be unable to help.

Frequently, there are local meetings at Senior Centers or churches in your community where family members meet in person and can talk to others who understand. I found one in my area and it was a huge support emotionally as well as just some practical info sharing. It may help your dad to find one, or it may help you too. Having boundaries on the time spent with managing the situation also helps so it does not take over your life - which would be so easy to occur.

harshedbuzz

@jennifer1995

This just gets worse and worse.

Is there any way you could coerce dad to re-do the POAs? I would not accept the assignment of medical POA until I also had one for the financial piece as well. Unless their holdings are very complex, a financial POA doesn't need to be a professional in the financial field just as the executor of a basic Will doesn't have to be attorney. You can hire consultant services as needed. Worst case scenario is dad drops dead. You opt to put mom in a lovely MCF and your sister refuses to cooperate in terms of payment. Then what? Do you quit work and undermine your own retirement to care for mom while sissy's livin' her best life.

You said: She will fall (the crisis) and end up in the hospital and then skilled nursing. I think they will decide she cannot go home safely or my dad will refuse to take her home, and the ball will get rolling on memory care unless he is willing to do full time in home care. He is not. He does not want her there long term.

I personally can't fault anyone for not wanting to be the other resident in a "nursing home for one". It would be unpleasant for some to have their sanctuary and routines disrupted by a roster of strangers invading it to provide care that could happen elsewhere. For a person with autistic tendencies, you are describing hell.

That will be the crisis. Or he will end up placing her there against her wishes. I just want her to get the care she needs and am not set on MC or in home care. It is not my decision anyway. My sister however, if that happens, we will have hell to pay.

I hate to state the obvious— it's always against their wishes. At a certain point the POA makes this decision on their behalf and makes it happen. Sometimes that involves trickery which feels awful but at the end of the safety and the appropriate level of care are more important than honesty. I told dad he was seeing a new doctor and took him to MC explaining that the new doctor wanted him to have rehab until he got stronger and steadier on his feet.

About your micromanaging sister. I have no doubt you know her best— sibs do. But it is not unusual for families to hire either an Elder Care Consultant (basically a social worker who acts as a liaison between family and facility/services) and/or HHA for an additional layer of care and a second set of eyes. This is actually advisable if the individual in care is unable to be moved closer to the POA. Even at dad's MCF, there were families who hired companion care even though they lived locally and visited routinely. Sometimes this was a HHA who had been with the person for a time to help with the adjustment and sometimes families of those who were a bit more functional felt their LO needed more stimulating interaction than the current residents offered.

HB

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harshedbuzz

@jennifer1995 That's huge of your dad to admit. I'm glad he was able to.

If your mom would still be deemed competent by an attorney, and the bar is ridiculously low, you could have the POA redone. It would not be an unreasonable thing for the successor POA to be the daughter who is 1) a hands-on caregiver and/or 2) local to the PWD. One could even make the case that it's an undue burden on your sister. If this is done, there is no need for sis to be informed unless you actually need to assume the responsibility because of dad's incapacity to continue.

I suspect your sister will be unhappy whatever happens. But the reality is, she who is phoning it in doesn't get a vote. If your dad placed mom over your sister's objections, there's not much she could realistically do about it. Her only recourse would be suing to obtain guardianship ahead of an actual spouse which would be a hard sell in the absence of gross neglect. Her lack of involvement thus far and your support of dad would prevent this happening in reality.

It's sad, but so often this disease fractures families and relationships.

HB

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H1235

https://alzconnected.org/discussion/comment/211477#Comment_211477

My brother refuses to lie to my mom. Whats her to make decisions she has no ability to make. There is no question in my mind she is easier to deal with than him. He let her pack to move to AL. He says she has a right to decide what she wants there, it’s her personal things we can’t do that. Family can be so difficult.

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ButterflyWings

@jennifer1995 your mom’s advance directive seems to apply right now. Based on all that you have shared, “she is too much for (us- you all) to deal with.” Currently.

I hope this does not seem unkind, but there seems to be some overthinking here and it appears to be standing in your way. Even though it sounds like both you and you dad know what to do. You are sometimes talking yourself and him out of it, it seems. In the business world they call it analysis paralysis.

Unintentionally, when you challenge his plan to follow Drs orders and use the ER, it talks him out of it or can raise his fears or confusion about how to make it work. Or when you can’t see how recommendations from members here can, and do work— and convince yourself that a different scenario will unfold in your case — it maintains the status quo.

Then you get mad at dad for reaching out again to vent. It sounds like if your mom can’t agree (and even gets angry with him), and your sister is vehemently opposed though awol, he may be running things up the flagpole with you to be sure he has some backup at least. And in your understandable frustration (plus it sounds like some skepticism), you end up instead bumping heads. No action is taken in the moment, the can gets kicked down the road. And your mom continues to be truly at risk and unsafe. Urgently. I think it might be confusing to tell dad not to leave her alone but then get frustrated when he won’t leave her alone to go redo the POA with you, does that make sense.

I know how totally paralyzing and just mind-boggling this disease can be for every party directly involved. Believe me when I say this. Living 24/7 with a PWD LO will scramble your brain, terrify you and make it nearly impossible to think straight. That is me most days but for the grace of God. “But” someone is going to have to step out of formation, ditch the merry-go-round and do something different. You deserve that, so does your mom & so does your dad,

Many people here have taken the exact steps and used the exact words they are advising you and your dad to take. Take her to the ER to be checked out. Call for a paramedic transport if he can’t get her into the car. And insist there is no safe discharge plan. Or for this week, at least get a hospice evaluation even if just to have added eyes on her and another experienced voice for your dad to consider.

I know it is anxiety inducing for you both plus he is afraid of her anger. Please don’t talk yourself or him out of this without trying what the Dr and members here are suggesting. I know all this is super hard. Forgive if I have offended. That is not my intent at all.

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Quilting brings calm

Jennifer … a lot of times the way to get an MC placement is via the ER/psych hold process. A psych hold for a dementia patient is different than any psych hold you’ve experienced. He needs to tell the ER that he cannot take care of her and it’s no longer safe for her in the home because of that. That’s what we are trying to tell you. Please tell your dad yes the next time he says he wants to take her to the ER. What’s the worst that can happen? She gets sent home after a while?

It’s totally understandable that your dad feels that he’s not financially able to have 24 hour care for her. It’s often more expensive than a facility and a lot less reliable. People often just dont show up for their shift, or they aren’t well vetted by the care agency. In addition, without knowing the ages and physical health of your parents, there’s several more years of care for her that your dad needs to pay for and then he needs to provide for himself during and after that. It’s not feasible for him to move out, pay rent somewhere, pay expenses on the current home and pay for 24 hour care for her. I don’t think your sister truly recognizes the cost. If your mom is not able to sign a new financial POA that designates your dad first and you second, you’d better hope he stays well enough to make decisions for your mom until she dies… because your sister is clueless about the realities of their situation.

I’m really having a hard time trying to figure out what you want to hear from us because we are telling you the standard best practices and you are telling us that you don’t agree with that. What do you feel we should be advising you to do? Because we feel we are failing you at this point.

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Arrowhead

I understand it can be rough on you hearing about all this, but it's a lot rougher on your father having to live with it. He needs to talk about it, and he needs all the kindness he can get. Please be kind and let him talk.

harshedbuzz

@jennifer1995

How are you doing? I've been thinking about you this week.

HB

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