Mom with Mid-stage AD, dad running on empty - Is this our future?

GingerMay

I have been on this site for a few years. I started visiting as I realized mom has AD, and dad will not admit it. They refuse to get tested. I needed to know what to do with this new dynamic, and how to care give to parents who will not acknowledge any decline. Dad handles every aspect of their lives. Mom is 85 and dad is 88. They live in their home of the last 20 years.

For five years mom has been unable to participate in routine household chores, cooking, driving, shopping, or socializing. My dad refuses outside assistance. I have tried to arrange meal delivery, online grocery ordering, house cleaning, etc., and dad refuses. During the height of Covid, he gave me his credit card number to have food delivered. I kept deliveries going about once a month, but once he realized I was doing that, he cancelled his card. He frequently gets irritated with me when I offer help, sometimes swears at me and says I worry too much.

The house is messy. Dad still has a lawn service maintain the yard, but inside is cluttered and the microwave and refrigerator are also a mess. It is livable, but not great. I sometimes wonder if my dad is also getting AD too. He used to shower and shave every day, but no more. Recently his feet and ankles have gotten swollen, so he can only wear shoes with laces untied. He shuffles around and refuses to see his doctor. I feel like he is likely to have an accident, leaving mom with AD alone and me being the one to get her into an ALF. I feel like they are a ticking bomb. I also feel like dad is unappreciative of me. They just seem to keep trucking along, slowly unwinding. Sometimes I feel like this will never end.

When I visit them, I have an emotional 'hang over' for several days. I am tired, depressed and generally feel unwell. I am always left wondering is there anything I can do to age well? I do not want to be the way I see they are. Are there steps you can plan for as you get into your elderly years to support yourself? Thank you for any feedback.

terei

If parents wont cooperate, sometimes you just have to wait for a crisis + then take control of the situation. I hope you have POA + other legal paperwork.

Ed1937

I wonder if it would help to tell him that there are many causes of the symptoms that if identified, could be treated, and the symptoms might fade away. But this needs to tackled before the brain gets to the point where it can't be saved. This would not be a lie.

harshedbuzz

This is a difficult situation indeed.

Do they see doctors regularly? It would be a real tragedy if one of them had a treatable condition that mimics dementia but is treatable. Your dad's foot swelling is also concerning-- does he have kidney or heart conditions?

If they do see doctors, you could communicate your concerns directly to that person who could start the ball rolling. They won't be able to share information with you unless you are listed on signed HIPAA forms. If you can't prevail to have them seen by a doctor you have 2 options--

1. One is to make a Plan B without their input. Tour SNFs, MCFs (mom is not likely to be a candidate for AL alone and if you plan to keep them together understand that a hospitality-model AL won't offer dad much more than meals and a weekly light housekeeping) and ALs. Make decisions about where dad would go for rehab after a hospitalization and where mom would go until he is able to care for her. If dad dies or becomes incapacitated, you may need to act quickly to obtain emergency guardianship of one or both.
2. If conditions at home are truly bad enough-- like dangerous or unhealthy, you could pull the nuclear option of calling APS. This isn't a great option if you're talking superficial stuff like messy.

GingerMay

Thank you for the replies. Doing my own research on ALFs nearby for long term placement, and also having a plan where mom could be placed temporarily if dad will be hospitalized and in rehab for short-term, are plans I am making in my own mind so when the time inevitably arrives I will know what steps I will follow.

I do wonder if the onset of swelling in dad's feet and ankles may indicate a heart issue. He has never had any problems with heart or kidneys though, but at 88 years old I suppose it could happen. Both he and mom get routine exams from their PCP. Dad has had COPD for years which has been controlled with medication, but lately it has not been helping. I wonder if the shortness of breath is from another cause.

Around eight years ago, they said I am on their HIPPA forms, and I have health POA. I got a copy of their forms. However, since then dad has gotten mad at me several times for various things and said he was dis-inheriting me and has changed their Will a few times. I have no idea what other changes he made, and it is possible I am no longer on any of their papers legally to assist with anything.

It would be ideal to be able to make such plans with their participation now, for both long-term care and short-term. It would be ideal to have them indicate their preferences, make visits, etc. I have offered, but they have no interest.

I feel like this is just a case study how NOT to age well. Angry, rigid, refusing help. I feel like it is so common, and wonder if it is the destiny for all of us to end this way?

Anyway, thanks everyone.

Iris L.

Swelling swelling of the feet can also be a sign of deficiency of the B vitamins. Many older adults have difficulty absorbing nutrients from diet. Supplementation may be in order. Discuss with the doctor.