Out of state caregivers need advice

Swiftee3

Hi, I am new to the forum. Thank you for offering this place to find solutions for caregiving. My parents retired to SC, away from all family, and have enjoyed over 40 years there. Sadly, mother's Alzeimer's has progressed quickly the last six months although stable/manageable for 8 years before that. She no longer recognizes us and is not doing any of the simple things that she enjoyed such as walking around the neighborhood with my father, playing easy card games or reading. She seems to be obsessed with her shoes "not fitting" and her nose and eyes running although they are not (but we are seeking medical help in that area to make sure). They were sleeping on a soiled bed (which they both sleep on!) before we could convince my father to have her wear disposable adult garments. She loses her glasses, hearing aids and rings all the time and we are constantly looking for them. Currently we can't find their passports and I'm sure there is more that we will discover as we go on.

Our father, who has been the primary caregiver, is in failing health, depressed and his symptoms have worsened since her steep decline. He has no energy and sleeps most of the time. He is often confused and forgetful. In addition, he can barely drive and he seems to have lost his ability to prepare meals or help our mother. He does not seem concerned that he is not well.

My sister and I have been flying in to care for them for a week once a month almost a year now and are in agreement that this situation is unsafe for my parents and our help is not enough to cover their needs. Although our parents do go to their doctors regularly there doesn't seem to be any concern about the progression, which is very frustrating to us and thwarts our efforts to get them help.  We have offered to move them into our homes, or an assisted living or have a home health agency bring in help. They will not consider anything.

What is the best strategy when dealing with two parents in decline that refuse to get help or listen to ideas on how to safely manage this time? 

robinja

Hello - I am sorry to hear about your parents. My parents were in a similar situation except my mother insisted on moving closer to “town” after years of living out in the country - this was in an early stage of her disease when she was quite depressed about her social isolation. We were lucky in that regard because they ended up moving into a condo affiliated with an assisted living facility, so they were able to get meals there and have some additional support in addition to the social aspect. While I’m sure that helped my dad, he was still under a great deal of stress - none of us realized until after he died how difficult his life must have been. 

I don’t think it’s that unusual that their doctors aren’t pushing for them to get more help. They see their patients for such a short time at each appointment it is not even possible for them to really evaluate their capacity to live alone, etc. I was frustrated that my parents’ doctor wasn’t able to point us to senior resources in the area when we were trying to figure out options for them. 

I’m sure others will have some suggestions including ways to legally be able to step in and make decisions for them, which sounds like it may need to happen based on your concerns for their safety. 

Coincidentally, my parents were in SC - Greenwood, to be specific. If your parents are anywhere near there I’d be happy to share my limited knowledge of resources there. I’m a few hours away, so my brothers have handled most of the decisions, but kept me in the loop. 

Sorry for your situation and I hope you can work out something soon. 

harshedbuzz

Swiftee3 wrote:

Hi and welcome. I am sorry for your reason to be here, but glad you found your way to this site. 

Our father, who has been the primary caregiver, is in failing health, depressed and his symptoms have worsened since her steep decline. He has no energy and sleeps most of the time. He is often confused and forgetful. In addition, he can barely drive and he seems to have lost his ability to prepare meals or help our mother. He does not seem concerned that he is not well.

To my ear, it sounds as though your dad might have some issues with cognitive impairment as well. Severe depression can look like dementia, but best to have a professional sort this out. Scattered and forgetful is one thing, sleeping in filth is another. His lack of concern could be anosognosia-- an inability of an individual to recognize that they have had a shift in cognition and abilities. 

My sister and I have been flying in to care for them for a week once a month almost a year now and are in agreement that this situation is unsafe for my parents and our help is not enough to cover their needs. Although our parents do go to their doctors regularly there doesn't seem to be any concern about the progression, which is very frustrating to us and thwarts our efforts to get them help.  

We have offered to move them into our homes, or an assisted living or have a home health agency bring in help. They will not consider anything.

This is not sustainable. They cannot continue to live this way. 

At this point, I am not surprised that there is no sense of urgency around your mom's progression. In dementia that is expected and inevitable. Your father, on the other hand, needs to be worked up. Many long-term PCP do not push for a dementia diagnosis unless pressed by family. Others might not recognize symptoms if your dad is either "showtiming" in the office or reporting a rosier situation at home than actually exists.

Have you communicated your concerns to their PCP? Even if you are not on the HIPAA forms, you can share your concerns with the docs and perhaps trigger a quick screening for dad at his next appointment. Another option would be to schedule an appointment for him which you are there and go along with him after alerting the doctor to your concerns.

One concern I have given their isolation from family is the risk that something could happen to your dad and your mom would be unable to recognize it as an emergency nor know the steps needed to get help. This happened to me before my dad was diagnosed; my mom developed an autoimmune liver failure and nearly died with dad as her advocate living 1000 miles from family. She was incoherent and the color of a school bus and he was blathering "something, something, she's mean and lazy". I was only looped in when her hospitalist who split his time with a PCP where she was seen looked up her emergency contacts. 

Talking with them may be pointless. Even if your dad was a more capable and robust version of himself, the concept of moving in the context of being a 24/7caregiver probably overwhelms him. Given your description of the situation, he may not be able to actively participate in this discussion-- I'd have him evaluated asap. Your mom is past this discussion. This is going to be something you do for them logistically. It may even be easier to invite them for a "visit" to your place and let it become permanent over time. Then you can deal with their stuff in SC after the fact. 

What is the best strategy when dealing with two parents in decline that refuse to get help or listen to ideas on how to safely manage this time? 

The best strategy is the one that gets them safe. I'm team what-ever-it-takes. 

Do they have POAs and Advanced Health Directives and such? If so, you need to understand what options you have to invoke them. If they don't, you'll need to finesse that or consider guardianship. A CELA can advise you. 

My strategy was basically waiting for the other shoe to drop. When my pleas fell on deaf ears, I withdrew and waited for a crisis. In the meantime, I crafted my plan B to be implemented as needed. I had a memory clinic and PCP picked for them, a nice senior apartment complex, SNFs checked out. When the shoe dropped, I was able to act swiftly.

In my situation, I was able to eventually convince my mom that she needed to move near me. She was unhappy to give up her place at the beach and the one in FL, but she was still reeling from her near-death experience. We did the legal paperwork once I got them back to my neck of the woods-- I knew I'd be dealing with cars, houses, medical records and such, so the CELA made sure the documents would work for those tasks. 

I have a friend whose dad was fighting him on an evaluation and getting help in. Dad lived in a carriage house behind his home which was trashed. Friend documented with photographs and he and his brother went to court to become dad's guardian which forced dad to submit to a neuropsych evaluation. Dad fought this; he still had enough cognitive reserve to obtain a lawyer but didn't do well in the eval so the brothers were named co-guardians.

Another option is to go "tough love" on them and wait a month or two without visits and then ask for a "well check"-- if dad is as overwhelmed as you suggest this might help you make a case for guardianship and moving them. This is kind of the nuclear option, but it can work.

HB

MN Chickadee

Is their legal paperwork done such as a power of attorney? This will be the biggest factor as to how to proceed. It sounds as though your father has had his own cognitive problems arise. This can happen and be masked when one spouse is much worse so the other gets lost in the shuffle.  The first step I would take is consulting an elder law attorney in their state of SC (things vary by state so you want to hire one in the state they reside.) The attorney can advise you on next steps. Some attorneys are good at finessing the situation and getting the PWD to see the need for a POA for the future. If the POA paperwork is not done you may need to pursue guardianship of both of them. If someone does hold POA it depends on how it is written. You may need a doctor to declare him incompetent to spring the POA. It would be prudent to get your dad in for evaluation with his PCP and ask for a referral to neurology. You may need to send information to the doctor ahead of time abut what is going on at home, document those things if possible so it really becomes clear their living conditions, and really work behind the scenes. Make the appointment yourself and find and excuse to accompany him. 

As for dealing with them day to day I would embrace therapeutic fibs. Don't discuss dementia with them or the need for them to accept help. Find the right fibs. Maybe a doctor appointment is a quick blood pressure check or a check up medicare requires. Maybe this aide in their home is a cleaning lady and not an aide - a birthday gift you gave them so they don't have to clean. Maybe this med you are giving them is a vitamin. Eventually maybe they are coming to visit you for the holidays or a grandkid's special event and it gets extended and extended - bad weather, can't get out of work this week to take them back etc. These are the things we end up using once our LO's minds are beyond comprehending reasoning. You will likely have to have a family member in SC with them more to drive the ship while you get it worked out, always working behind the scenes to get stuff done. Or wait for the crisis, which will come. Some people do have to wait for that crisis, hard as it is. In the mean time I would decide with your siblings where you will move them to once it becomes legally possible and tour facilities and get on wait lists so you are ready whenever the day comes. Likely a memory care facility where they can share a room. Or if you intend to have them live with you begin making your home handicap accessible and make preparations. Being in the same city as the guardian or POA is key. You can also make plans for the actual move so it's ready when you need it. Decide if you will hire a moving company, who will help with driving if it's a long distance (those kinds of road trips with PWD require extra help usually.) Who will set up their room ahead of time. There are things you can do to get ready without them knowing.