PAG2809
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Mother - Update and cautionary tale

Wednesday, March 11, 2015

A day or two after I first wrote about my mom, my sister and I finally were able to go to Pennsylvania, where she lives. We thought we were going for a week or two. Until we got there, my brother and step-dad were dealing with all of this alone. My step-dad is terrific, but he's had a hard time coping with all of this. He's 87, they've been married a dozen years, and now she's a different person most of the time.

And backing up... my sister and I were able to get free lodging at the rehab hospital while my mother was there. Its no frills, they do ask for a donation (and got one), but it was a huge help to be right there and to not have to pay for a hotel room. The rehab hospital staff were wonderful. Mother had some pretty good days, but she was also awful a fair amount of the time, and they were unfailingly kind and patient. Her patient advocate was a huge help both in fighting with the insurance company to keep her there as long as they could and also in helping us find the next place for her to go.

If you're at an age and a place where you're saving for retirement, here's a cautionary tale... My parents saved nothing and then my mom took out a reverse mortgage to do work on the house. The house is worth perhaps $10k more than she borrowed.

This is going to sound strange, awful, or both, but with my father we were lucky. He developed a catastrophic illness (MDS), was in and out of the hospital for a few months, and then he died. Between Medicare and supplemental insurance, almost everything was covered, and then it was over. The small amount of money he had saved pretty much paid for his funeral.

My step-dad sold his house a couple of years ago. (both widowed after long marriages, each owned a home) He paid off bills for himself and my mother, helps her with various bills, has helped his family.... and he now has less than half of what he got for the house.

And now my mother needs care. Her speech has returned to normal. She has gone from walking slowly and a bit unsteadily (90 yrs old, bad knee) to needing a walker. Her short-term memory is poor and she's not always anchored in place and time. When she doesn't sleep well, and a dream can make her feel as though she hasn't slept, all of these things are worse. When she's well-rested, she can be very close to normal.

My mother's house is 300+ years old. The kitchen floor is brick. There are steps between the rest of the first floor and the kitchen. The house has 3 floors (not counting the kitchen as a floor). There are steps between both the front and back doors and the ground. From the back door to where they park is unpaved. From the front door to anywhere they could park is a flagstone walk that ices up in winter. Even if they could afford to have her cared for at home, its just impossible. Oh yeah, and my step-dad is also unsteady on his feet.

So, when it got close to her discharge date from the rehab hospital we were told that she needed supervision. Not a nursing home - she can handle some of her own care - but she can't drive or cook and since she doesn't remember whether she's done things, she needs to be reminded of everything from whether she needs to go to the bathroom to changing her clothes, brushing her teeth, showering, and even eating. She's improving on all of these things, but she still needs reminders. Her brain could recover from this injury, but it might not, so we watch and wait... while trying to find somewhere for her to live.

We knew the house was impossible, so we started looking for facilities, and that's when we found out both how little they have and how much care costs. We really wanted to keep her out of the county-run home, but they have nothing. They were turned down by many places. I wish that I could convey what this process was like, but until you've been there... With some help from the state Office on Aging we were able to get a list of the facilities in our area and which places accept Medicaid patients, because they will end up spending all of their money and then needing Medicaid, and Medicaid is much more complex than we could have ever guessed. For instance, once they've spent most of their money Medicaid will evaluate their spending over the past 5 years and penalize them for any gifts they gave. They'll come up with a total dollar amount of gifts, divide it by the cost per day of the facility they're in, and notify us and the facility that they won't pay for X # of days. This will happen AFTER they've spent their own money.

Mother spent a couple of weeks in a nursing-home type facility. We needed her to be somewhere while we looked, we needed to know how she was doing because we really couldn't tell while she was in the hospital, and we hoped that she and my step-dad would be able to move into the home attached to the facility. After 2 wks they decided that she was too much of a wander risk to take them in the home affiliated with the nursing facility and keeping her there was very expensive, so we had to make another move. We finally decided that since no one knows whether she'll recover or to what extent, we needed to deal with now without making a long-term commitment. We also needed to get the two of them living in the same building and find out 1) whether he could handle being around her all the time and 2) whether she spent as much time trying to leave if he was in the building. We toured 2 local places that have 'memory care' wings for my mom and 'personal care' wings for my step-dad and they moved in to one of them about a week ago.

Oh, and I left out the part where my sister Peg (who has power-of-attorney for my mother) and I spent an entire day searching the house looking for records. We were able to call her attorney and get copies of her will and the power-of-attorney, which were both updated in December, but it took all day to find her checkbook and basic records... and some things (like her car title) we haven't found yet. As we started to look for records, we realized that my mother wasn't doing as well as we thought she was before the fall and that even if she gets back to that point, she can't handle things by herself anymore.

My sister Peg and I had been away from home for 6 wks. My sister Mary Kay had taken leave from her job and come in from Seattle for 3 wks. We're all home now, but we're all planning to be back there by the end of March. We will soon have to make some big decisions not just about my mother's care but about her car, her house, and the house contents. We will probably try to sell the house, rather than surrendering it to the bank holding the mortgage. We will hold on to some family heirlooms, but we'll sell much of the contents of the house. The doctor at the rehab hospital filed an official report that she can't drive anymore, so once that paperwork is processed the state will revoke her driver's license, so we're selling her car. None of this is going to support them for the rest of their lives, but it may buy us some time. I'm guessing that its going to take us a year to figure this all out...


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Member Comments About This Blog Post
  • FORZACHANDMATT
    It's so tough trying to figure this all out - you and your sisters are wonderful to be doing so much
    1776 days ago
  • JAMIRBLAZE
    I recommend that you speak to someone about finances that specializes coverage for people with medicaid. We were able to structure my grandmother's so that not all of her assets were used up for the facility that she was in for some time before her death. It cost a bit of money, but it worked out in the long run.

    Make sure that you take care of yourself as well as mom. This is something that, as you've stated, could go on a very long time, so pace yourselves. Things will fall into place.
    1776 days ago
  • SPINNER86
    I am so sorry you and your family are going through this. My brother & I went thru this on a much lesser scale with our mother. She had her faculties but had broken her hip and was never going home. Too long a story to go into but being a diabetic she never healed and developed complications. I wish you the best. Please reach out to all resources for help. It's not easy getting old and I think even harder watching those we love do it.

    Sue
    1776 days ago
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