Sandwich generation--spouse caregiver (my parent) and denial

housefinch

I've been reading many posts and want to thank everyone for your wisdom I've benefited from, even if I haven't posted before. I live about a day's drive from my mom and stepdad; stepdad has Alzheimer's, maybe early Stage 6. I have 2 kids, ages 12 and 8, both with autism, older is mild autism, younger has moderate autism and intellectual disability, needing lots of support (eg needs a 1:1 paraprofessional with her in regular classroom). This is so you can understand my ongoing life stresses. I am writing because I have reached a frustration point with my mom, who is my stepdad's spouse of 22 years and caregiver. She is 79; stepdad is 92 and in amazing physical health (goes to gym, on maybe 1-2 meds for arthritis). My mom has a pattern of denial or downplaying life difficulties x years, so this behavior is not new. She has never read a book on autism or worked to learn much about my kids' diagnoses or challenges. She now has not educated herself about dementia and continues to behave as though her life hasn't changed. For instance, she recently hosted a lunch for 20 women at their house, even though my stepdad has incontinence that she refuses to address. She has made comments like, "I didn't sign up to deal with that. If he won't take care of it, then it's time for assisted living," etc. She is actually a caring and loving person, despite my current description, but she shuts down in times of stress, and tries to pretend it isn't happening. I visited recently (alone), and my stepdad spent the entire day either not talking (he is mostly quiet now), or when he interacts with her, he perseverates on "I can't do anything right for her" and becomes agitated. I have suggested she find an adult day care for him, plus a medication consult to consider treating what I suspect is maybe a persistent delusion or just dementia-related agitation. He perseverates much worse in the evening (?sundowning). He has lost awareness of his disease and has to be told, for example, to change his pants etc if he is wet before he walks to the gym (YES, my mom lets him walk the 2 blocks to the gym). Recently, my mom was still letting him walk to the BANK, where he withdrew $2000 to take his adult daughters out to dinner. He then misplaced the money, and since then, she finally put restrictions in place there. I already had to tell her she couldn't just "have the CPA keep an eye on things" because my stepdad opened several new credit cards and had late fees, etc because of course he didn't pay his bills. I am beyond frustrated. My husband and I decided we cannot stay with them, at their home, if we visit my hometown, because our 2 kids will be too stressed out in this environment. Of course, now my mom is beside herself at this decision. Sigh. I will continue to enforce that boundary for my kids' health and wellbeing. My mom even has an adult care manager as a consultant, giving her recommendations, who said 3 months ago that my stepdad shouldn't be allowed to be left home alone, etc, and she still isn't following these recs. I apologize for the long vent. Thanks to everyone who listened or even read this far.

M1

Welcome to the forum. Sounds like you are doing the right thing to keep your boundaries up on this one . i would try not to get dragged in to listening to her complain or to bailing her out. Tough though.

housefinch

Thank you so much. Just knowing I should stay out of it is so helpful! I am going to let the consequences stick. I appreciate your response.

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housefinch

My stepdad eventually found the $2000 (everyone turned house upside down) & bank now is only allowed to give him a paltry sum. He simply didn’t understand anymore that $2000 wasn’t appropriate for a dinner out. His daughters were horrified. I was baffled that my mom hadn’t set these limits already. He should have $20 cash a week and that’s it! They have trusts & my mom is financial & medical POA for my stepdad. I don’t know why, if she’s POA, he could access his account or open a credit card. APS is not involved. My mom has paid a local (excellent) geriatric care coordination service for their guidance on services, where to move to, etc. They are waitlisted for a full spectrum care facility (IL, AL, MC, nursing home, rehab, hospice) in their city. Wait is probably a year. My husband & I have wondered about her cognitive function for 2-3 years, but anytime I mention the possibility to my 2 siblings I get major pushback that I’m “looking for a problem or a diagnosis.” (I’m a physician but don’t care for adults). My stepdad has 3 adult daughters, 2 of whom are a big help, and 1 of whom is not consistently involved or in communication with the family. My mom is getting a hip replacement this month & stepdad is going to a daughter’s house. I already told her I think she should get Rehab as an inpatient for a few days unless she gets her act together to hire outpatient nursing for herself. Maybe I should call her PCP privately and ask for a cognitive evaluation at least in the PCP office. I haven’t wanted to cross a boundary there. She has an excellent PCP. However, I attended an Orthopedic appointment with her recently and was stunned by her rambling, tangential response to the doctor’s questions. She couldn’t give a linear history. I had to summarize things to make any sense of her story. Sigh. I’m probably answering my own question.

towhee

You asked why your father could access his account and open credit cards if she is POA. Because a DPOA is not guardianship. You can do a lot with a DPOA, but you have to take active steps, and it does not seem like your mom is doing so. Your mom as POA would have to call the credit companies and freeze his credit. If they have a joint account, she would have to either get him to take his name off or move the money out of the account as it comes in and put it in an account under her name and another account for him with her listed on the account as POA. The bank usually will not stop access to accounts that are already in someone's name because of a regular POA. Do they have successor trustees listed who are not each other? Sometimes what is in a trust and must be handled by a trustee and what can be handled by a POA can be difficult to determine. I would say it is time to stop commingling funds and also to consult an elder law attorney for advice and to get someone listed as DPOA for her if they are not already.

As for that hip surgery, whether it is nursing care or a family member, someone needs to be with her 24/7 for a while. I have known several people who have had that and come home, and they all said they could not have done by themselves. Maybe her doctor could suggest it? Even if you choose a rehab, she will need someone with her 24/7 for a couple of days. Also, I strongly suspect that if one of your siblings stayed with your mom during her recuperation you might not get so much pushback.

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housefinch

Thanks very much, towhee and victoria, for your incredibly insightful and useful information. The idea of moving to a facility where she gets Rehab and he gets AL/MC was already suggested by the geriatric care coordinator, and my mom has not moved forward with the idea. I don't know why not--maybe because she is still set on the different place (with the 1 year wait). My sisters, while less frustrated, are definitely baffled as to why my mom didn't move somewhere 5 years ago. She is currently getting the yard relandscaped, was remodeling their bathroom this year, choosing paint colors for the living room, etc. It just beggars belief. To put it this way--if my mom didn't exist, my stepdad would be in memory care. I have heard zero from her since remaining firm on my "hotel only" communication about visits. Her parents lived to 86 and 93 in their 150 year old home, with minimal support, so I don't know if this is what she is clinging to? I just emailed her that she should schedule a lawyer appointment, a CPA appointment for a to do list as financial POA or appointment someone else, etc. Thanks again for all your advice. I have a sinking feeling that it's going to take a crisis for her to understand how bad things are.

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MN Chickadee

Is her own DPOA all in order naming you or a sibling? If not hat would be a major priority before the hip surgery in case the anesthesia jump starts any existing cognitive decline. Is her PCP going to be following her through the hip surgery? I wonder if the mental scoring tests could be quietly administered during that process, maybe spin it as "to make sure the anesthesia has worn off" or to get a baseline before surgery, just protocol kind of thing so as to not alarm or anger her. I would put them on waitlists at MC facilities without telling them. That way if they hit a crisis point you have options. If your sibling who is POA is in the same town as her that works, if not I would put them on lists in the POA's city as well. I had my mother on the list at a couple memory care facilities long before my dad (the one without dementia) knew about it. I had small children and was the only back up if something happened to him. I could tell that one little thing, one little illness or broken bone in either of them would be a crisis and I knew we needed plans B and C. The siblings who won't hear of mom possibly having her own cognitive issues should definitely be told to go stay with her to help out during the hip recovery, that may take care of that problem....

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housefinch

Victoria, unfortunately, my sisters don’t feel things are bad enough yet, and feel my mom is a competent, independent adult in whose life I should not interfere. I think my 2 sisters see me as spending excessive time & energy worrying about this situation or “catastrophizing” about future crises.

M1

I doubt that housefinch. I bet your mother is in fact having cognitive difficulties of her own, from what you describe. I am also a physician (internist) and when i told her sisters that my partner was having cognitive problems in 2014, they completely dismissed me.

Watch out for dislocation after that hip replacement, if its a posterior approach there's a risk for at least six weeks.

housefinch

M1, thanks for your perspective. My mom has severe osteoporosis and already had a mid shaft femur fracture (periprosthetic) in other hip 2 years ago with delayed union that occurred on maximal osteoporosis therapy. She fell in the shower. We daughters only learned 24 hours later because she forgot her phone in the commotion of ambulance transfer to ER and my stepdad didn’t know our numbers. She’s a major fracture & fall risk. Her current shower safety plan is to have my stepdad with dementia within earshot of the bathroom. He wears hearing aids & sometimes doesn’t remember to put them in. It’s a disaster waiting to happen. I wasn’t sure if family members could contact an older relative’s PCP without family member seeing the phone call documented in chart. My mom has access to her own electronic medical record.

housefinch

Warning, vent post. I suggested my mom schedule another meeting with her care coordination RN & social worker to update them on my stepdad’s current level of functioning and get advice on managing a future move. This week they ate dinner at their #1 choice facility (continuing care facility) where an independent living home just became available. They’re unhappy because the food is bland and carb-heavy, wine is available only once/week, and the other residents seem old. Don’t even get me started on why my stepdad (PWD) drinks wine nightly. Well, my mom just announced she’s taking my stepdad (PWD) next week to see the AL & MC facilities at a local retirement community (ostensibly so they can both evaluate them, for when the need arises). He (PWD) has no understanding anymore that he has dementia and grumbles and gets mad anytime my mom discusses even moving to independent living. The only reason they could even consider independent living is because my mom lives with him. I strongly recommended she go aloneto see the MC unit because of his stage of dementia and likelihood of him not understanding, getting agitated, etc. Why does he need to be involved at all seeing a MC unit? Seems like a terrible idea. I explained to my mom that he no longer understands he even has dementia. She basically hung up on me (quickly ended conversation saying she had to go). Sigh. So frustrating.

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housefinch

Hi, Victoria, thanks so much for your input. I’m my mom’s medical POA & my sister is her financial POA. I don’t know who my stepdad’s back up is, unfortunately.

I didn’t want to cross boundaries by contacting the care coordination team myself but might have to. Actually, my mom hired them and is apparently choosing what to do from their recommendations or is too overwhelmed to follow them. APS is not involved. Her surgery is in several weeks and she has no plan yet for handling getting their house on the market. I asked today how she’s going to handle my stepdad during whatever staging or renovations they’ll need (hopefully minor), showings, etc, because he will clearly be stressed by that. She had no answer.

I really appreciate even just having an outside perspective on this situation. It has been incredibly validating for me. I have been frustrated for at least 5 years actually watching them spiral downward. I probably look like I don’t care what advice everyone has given & am not following it. That is not at all true. With 6 daughters between the 2 of them, all strong personalities, living in different states, and various levels of understanding of dementia, plus different relationships and communication strengths and weaknesses, I’m sure you get the picture. I have only so much I can do as 1 of 6. It’s a pretty fraught situation.