Let me begin by saying “thank you”.
After pulling my last post a couple of days ago, I got a flurry of private messages urging me to post because not only were people interested in dementia, they cared about me. I am so touched. The community here at Mrs. S. cannot be compared to any other. So, here it is. Well, yesterday was a trip out of state and almost an hour away to get the trial date moved for Dad’s lawsuit with his brother. As we were waiting, I noticed Dad put his phone number down wrong again on the court form. I looked and realized the past few times he's done the same thing. I said, “Hey, Dad, is that right? I think your prefix is different. Isn’t it xxx?” He looks and blinks a few times. “Ummmm. Yes.” He slowly scratches it out and I see he doesn’t remember. The prefix he wrote was completely random, one he's never had before. He’s been at that number since November, almost 6 months. This is typical of the form of dementia he has. I did have some hope – the public defender is conducting an investigation because he doesn’t think court paperwork was filed correctly. If this is so, we may get a dismissal. I’m just amazed at how long this can drag out.
The guardianship hearing for my dad here in my town, was rescheduled from last month, simply because the judge did not have enough time to review the case. It will go through with absolutely no questions or opposition because, thankfully, the psychologist skillfully showed the need for guardianship of the person and the estate. My father did show some kinds of moderate dementia (like the phone number incident), although he is still highly functional, and my mother because she's physically handicapped blind was classified as a "highly vulnerable adult.” This basically means, that I will be paying their bills, looking out for their physical and financial well-being, and in essence making major choices for them. At this point, they are still able to live independently, and I want them to for as long as possible.
For those who don't know, guardianship is a really amazing and highly detailed thing. When granted guardianship of someone, they still retain some legal rights like the right to drive and the right to vote, but other rights like the right to enter into business agreements, do legal transactions like buying a car or rent a storage unit, or work with money, or even marry or divorce, can be taken away. This is the type of guardianship that will happen for my parents.
So far, they are able to care for themselves in the capacity that I don't have to be over there on a daily basis. At this point, I pay their bills every month, but have not been active in making doctors appointments and scheduling other personal maintenance, or meal planning. Once the guardianship goes through late next week, it will allow me to move on their behalf, more than I have been and will put an end to some things like Dad using the debit card at will.
I will be able to schedule doctors appointments for both of them as well as apply for early Social Security for my mother. This is a huge relief because before they moved, she was denied many times, largely because my dad didn’t fill out the forms correctly. The happy news is that my mother did get approved for state medical coverage. So once she gets ID cards, the co-pays will be minimal.
I have been wrestling with two main things lately, regarding my parents. Perhaps you can advise.
One, is their storage unit. They are paying about $125 each month for the luxury of storing things in somebody else's space. The past few months as I paid their bills, we have run short of money because of this expense. I have told them and get the answer “We need it. I don’t’ know what you expect us to do. We have to store things.” Pretty much, they are putting off dealing with the issue. With the guardianship, I hope to be able to encourage them to deal with the storage unit and sort through all the boxes inside. I am not looking forward to the confrontation regarding this huge mess. I know for fact, there are boxes in that unit had not been sorted through in probably 10 years or more. Much of it is paper that can be shredded and recycled. It just has to be sorted. I am more than willing to help with this process after my dissertation is completed in June. Until then, it's a matter of planting a seed to encourage the process and not fighting over it. Legally, I will have the power to force them to completely get rid of it, but I’m all for trying other methods first.
I think the main thing that I'm wrestling with is my parents’ statement, "God has not told us to get rid of X, Y, Z." This statement literally makes me want to slam my head into a wall. I'm going to have to fight head-on with this over-spiritualization and deal with their amazing clutter and possessions. I’m not asking them to get rid of precious things, but boxes of papers and disorganization. When things are in storage, you don’t see them and you literally end up paying more than the items originally cost. They just can’t afford the luxury of not dealing with their stuff.
My husband had the brilliant idea of reminding my parents how they did not initially like the idea of moving, of living in an apartment, or other changes that happened over the past few months, and how each one has turned out to help them, not hurt them. I hope if things are explained properly, and openly, with love and support, we can come to an agreement and deal with the storage issue.
The second main issue I'm wrestling with is that for years of my growing up, my parents worked with student exchange programs in Japan and have made some very close friends. This summer, some of these friends will be visiting our town and, as of now, will potentially be staying with my parents for a few nights. As it stands now, my folks are not able to deal with visitors for more than a few hours, let alone overnight or those from another country. While their hearts are big, and they do have an extra bedroom with furniture, the reality is that, for a myriad of reasons, it just cannot happen.
So, I feel the need to intervene and draft a letter, politely explaining that they would be better suited to stay hotel rather than with my parents; that we would still be open to having dinner and visiting, but other accommodations will have to be made. Having traveled abroad, I know that if if ‘the shoe were on the other foot’, I would not be one to place a huge burden on friends who were unable to properly return the honor of being host.
So, Mrs. S., we are a diverse community. Anyone who is Japanese or have a Japanese spouse who can guide me in more detail? I want to be as respectful as possible in dealing with this.
On a more personal note, I am dealing with stress better. Thankfully, chiropractic adjustments have kept headaches at bay and my husband's gym membership allows me to go for free. Now that it's spring, I will start planting things in the garden again. The chickens now number five and are slowly getting over their winter "strike" of non-laying.
I am over the halfway mark my dissertation. This past week and a half very rough for me because my writing was really terrible. In reviewing it with my professor we had to laugh at the way some sentences were structured and what I said because it was truly not my usual excellent work. I so wish I knew someone in the area with the beach house or mountain cabin where I could go for couple of weeks to pound this out to get it done. I really need to work in uninterrupted way and I just cannot afford to stay even in a cheap hotel for a while.
So, thank you again for all your wonderful wishes, kind remarks, and words of encouragement. In the nicest note, someone described dealing with dementia as an ongoing puzzle or maze. That is exactly the way I feel. Some days you could slip right through and get done, and others, you keep hitting those dead ends and it is completely overwhelming.
What I find the saddest though, is that at some point, my father will not know me.
Your prayers and support mean more than you know.
