How to help my parents

tckats

Hello,

I am new here and so grateful to have found this site. My mom has some form of dementia (they refuse to get a diagnosis) and is losing her vision from macular degeneration. We, my father and I, noticed the dementia about two years ago but in hindsight I would say this has been going on for 4 years, she was just good at hiding it. 

I have been trying to help as much as possible but I live 3 hours away with my own family to care for. My father, in his early 80s, is really struggling. He cannot come to terms with this person she had changed into. She can be quite mean, cruel, and very stubborn with medication/treatment. He is stressed beyond his tolerance. He hardly eats and he rarely sleeps. He is lonely, isolated, depressed, and has given up. Yet, any suggestions to help is refused. I have encouraged him to see a doctor, to meditate, to join support groups, I gave him books to help him better understand her personality changes and how to manage behavior, etc... and he doesn't do anything. He just wants me to live with them and take the wheel. 

My mom is still high functioning; she cooks, does laundry, dresses and bathes herself. Having her in a care home this early would suck up any funds they have. They refuse a sitter. I am at a loss. I don't know what to do or where to turn. Any advice or suggestions would be greatly appreciated.  

Thanks and hugs to all who are in the midst of this storm and to those who have come out the other side. 

May flowers

So sorry you are going through this. We had such a hard time getting my in-laws to move near us so we could help my MIL with my FIL. She was much like you describe your father and it really took a toll on her health.

Would they consider moving closer to you? It’s hard with a PWD, but in our case his objections were eventually overruled because they needed the help. I hope It gets worked out soon, I know how hard it is to want to help but feel helpless. 

harshedbuzz

tckats wrote:

Hello,

I am new here and so grateful to have found this site.

Hi and welcome. I am sorry for your need to be here but pleased you found the site. Some of what you have written feels very familiar-- I'm an only whose parents were living 4 hours away half the year and a 3 hour plane ride the rest of the year. My dad was the PWD and in the early stages very wary of my interference robbing him of his independence while my mom happily made excuses for the most outlandish behavior. Fun times. 

My mom has some form of dementia (they refuse to get a diagnosis) and is losing her vision from macular degeneration. We, my father and I, noticed the dementia about two years ago but in hindsight I would say this has been going on for 4 years, she was just good at hiding it. 

This is not optional. Your mom needs to be seen by a medical professional whom you have contacted prior to the appointment with a bulleted list of concerns plus a short video clip of mom acting out. At the very minimum, she needs to be tested for treatable conditions with symptoms similar to dementia. 

Anecdote: I suggested, pestered and eventually threatened my mom around getting dad screened and evaluated starting in 2008. He wasn't diagnosed until 2016 after my mom almost died with dad as her advocate and he months later had a psychotic episode which led me to insist on taking him to a university medical center ER where he was diagnosed with one of the vitamin deficiencies (there are also hormone deficiencies that can impact memory and cognitions) that have similar symptoms to dementia. He was treated and recovered a considerable amount of cognition-- not as much as if it'd been identified and treated when I first raised the alarm. 

Even if it is a more garden variety Alzheimer's or Vascular dementia, there are medications that could be useful for symptom management and mood/behavior which could improve quality of life for both. 

You may need to create a fiblet to get this done. Perhaps a story about the doc she sees for her AMD requires a physical or that Medicare requires one or she will lose her insurance coverage. Another option would be to bring in a neurology consult should she end up hospitalized for another reason. And yet another strategy-- if her behavior can be a risk to herself or others__ would be to have her taken by ambulance to a hospital with a geriatric psych unit for evaluation and medication.

I have been trying to help as much as possible but I live 3 hours away with my own family to care for. My father, in his early 80s, is really struggling. He cannot come to terms with this person she had changed into. She can be quite mean, cruel, and very stubborn with medication/treatment. He is stressed beyond his tolerance. He hardly eats and he rarely sleeps. He is lonely, isolated, depressed, and has given up. Yet, any suggestions to help is refused. I have encouraged him to see a doctor, to meditate, to join support groups, I gave him books to help him better understand her personality changes and how to manage behavior, etc... and he doesn't do anything. He just wants me to live with them and take the wheel. 

I am so sorry. This mirrors my experience to a degree. In a way it makes sense, there is no tougher gig than caregiving for a challenging PWD 24/7-- IRL, there is no way someone would hire a person in their 80s to do this job. One of the normal aspects of aging for many is a decline in resilience. I saw this with my own mom. 

I am not surprised your dad hasn't leapt at your suggestions. I hate to make generalities, but men of a certain age can be quite rigid in terms of gender roles-- they don't see caregiving as mens work and things like meditation are going to be way too Kumbaya and crunchy for them to consider. You didn't flesh out your member profile when you joined: are you a daughter? It's not unusual for parents of a certain generation to consider their daughters to be their LTC insurance. 

A support group with other husbands would be great but you may have to physically bring him there the first couple times.  I lined my mom up with an IRL support group and it was one of the best decisions ever. Like you I passed along a carefully curated collection of books and short articles to help her understand her situation or made suggestions about responding to dad in dementia-informed ways and, quite frankly, I may as well have been talking to her cat for all the traction I got. But when I took her to the support group and the lovely gray-haired men and women who were her peers said the same things I did she embraced it. Go figure. 

My mom is still high functioning; she cooks, does laundry, dresses and bathes herself. Having her in a care home this early would suck up any funds they have. They refuse a sitter. I am at a loss. I don't know what to do or where to turn. Any advice or suggestions would be greatly appreciated.  

This raises the next thing your dad/you need to do. He needs to sit down with a CELA to do the necessary paperwork. They both need POAs and Health Care Directives. Dad can be primary agent on mom's with you secondary. You need to be primary for dad (this'll need to be done discretely as mom will expect it to be her- a good CELA will finesse this for you). Your dad also needs to understand Medicaid planning for the future if he doesn't have unlimited assets. Care is expensive and Medicaid is the safety net that could allow her to go into care (or maybe get some care in the home depending on the state) while he keeps the house, a car and some money on which to live. 

For you, the most critical piece is a comprehensive Plan B. Your responsibility for all of this hangs on the health and well-being of an 80+ man. About 1/3 of care givers pre-decease their PWD. It's best to have Plan B fleshed out in case the shoe drops. 

If you are unable to force an evaluation and get the necessary paperwork in order, then I would find a top notch neurology practice near you as well as a CELA so that you can obtain guardianship on an emergency basis to start. This is more expensive and time consuming than a POA, but if your dad can't make it happen it's your only option.

In your shoes I would research and tour MCFs and SNFs near you and understand the Medicaid rules they have should dad be unable to care for her at home because of death or disability. It's best to move her nearer you for the inevitable trips to the ER and such and to allow you to visit regularly to make sure her care is good.  

I don't know if this helps, but I crafted a shovel-ready Plan B after the hospital in Florida called me as mom's "emergency contact" because she was in liver failure and dad was writing her off as "mean and lazy" when I called daily. I had a Memory Center picked and appointment made (these can be as much as 6 months out, btw). 

I had a CTJ with my mom in which I informed her that if she left the "dad situation" to me, I would obtain guardianship and put him in the first available place to take him sight-unseen and that if she wanted a say in his care or any help form me, she needed to play ball. 

Given their ages, a CCRC near you might make the most sense. They could start now in an independent living side and transition to AL as needed. When your mom needs higher acuity care, she could move to that area while dad would be a short walk away. 

The AMD could be an issue. While staying in her home would be ideal without dementia, at some point she may need to move and doing that sooner would be better for a lot of reasons. I would also ask to be certain any MCF or CCRC has experience with and will accept a resident who has low vision. 

Thanks and hugs to all who are in the midst of this storm and to those who have come out the other side. 

HB

tckats

May Flowers, We are in discussion on having them move closer. They live in a beautiful forest on a lake and the thought of moving to a city is agonizing for them. We are getting to the point that they realize their backs are to the wall. Thank you for responding. It is crazy but it helps just knowing I am not alone in this madness.

tckats

Harshedbuzz,

Thank you!!!! Thank you for the time you took to detail out what needs to be done. I appreciate that you were frank with me. You have made me realize that I need to get on the ball with this. I have finally got my parents to meet with an CELA to get a trust and POA set up, so that is a step forward. My mind is jumbled with all that needs to be done and how to navigate it all, but at least I have a clue what to do. Again, thank you! 

Cyndisaunt

Many of us have been where you are, definitely get the paperwork in order and have the conversations now to know what your parents would want all the details. There are so many. 

Keep your questions coming. 

I will add that I wish I had sat in on the conversations with the elder care attorneys earlier on in this journey, similar to you if I had 4 years earlier when I was suspecting cognitive decline.

There are a lot of details specific to the state in which your parents live and those details are changing very rapidly. 

Cyndi