Updates on Parents & Dementia
Posted 12 April 2012 - 12:37 PM
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.
Posted 12 April 2012 - 06:57 PM
You sure have gone through h*ll with the ongoing battle with your parents. It is difficult in the best of circumstances but when one is slipping in and out of dementia it can be an impossible situation. Are they being lucid and stubborn or is it dementia rearing its ugly head. It can be different from one moment to the next.
As for the storage unit, you said a lot of it is papers. Could they handle sorting through one box at a time. Maybe they wouldn't get so overwhelmed. At least until after June. Can your mother see to help go through the papers?
My first thought about the visitors was to write them a letter explaining your parents situation and mental health issues. I lived over there for a year and 'saving face' is very important. I would tell them how excited everyone is to see them and how welcome they are but since your parents have moved and because of age issues they are unable to have long visits. But, you will be more than happy to help them make reservations nearby as not to confuse them (parents). Be apologetic and also welcoming. Ask them if there is anything you can do to assist them.
You can't always get what you want, babe
But if you try sometimes, you just might find
You get what you need.
~Mick and Keith~
Posted 13 April 2012 - 07:35 PM
Drop the subject.
In June, go over there when you have time, alone. Take one box for shredding, one box for keeping, and one box to take home and decide about later. Store the keeping box on site, but mark it so you don't re-sort it.
Next trip, take three more boxes.
*If* your folks ever get the notion to go over and look through the unit, will they even notice that some of the junk is missing?
When you're down to just the keeper boxes, decide whether to get a smaller/cheaper unit or move it to their place. Don't ask. Don't discuss. Just take care of it for them.
"We cannot defend freedom abroad by deserting it at home." Edward R. Murrow (1908-1965)
Posted 13 April 2012 - 08:10 PM
I really don't want to do it for them, for it strips them of their humanity. Dad needs to do it because the mess is his. He still has enough faculties to resolve this. I strongly feel, as does the psychologist, that he needs to resolve some of his chaos and thereby own some of the stress he's brought into the family. In small units, we can manage it.
Should he not be able to finish the job, I will, but I really need him to make an effort. If it were up to me, I'd do it in a few days and be done, and he and my mom (who is completely blind now) would NOT be happy with me. I'd recycle a boatload of paper and give a bunch of stuff away, but that doesn't help him at all. And, no. They don't know what they have, so they don't know what would be missing. I am prepared to do it - but later.
Jeepers, I am working on a letter and will more than likely send it in May, so they have time to plan.
Posted 13 April 2012 - 08:57 PM
Just do what you can, when you can, and we love you for doing it.
Posted 14 April 2012 - 09:45 AM
When my mother's dementia started to advance, at age 70, I took the easy way out and sent her to one of my 4 brothers, because, I have my MIL to focus on. Mom was stock piling everything that was not important and giving away everything else!?! I'd ask, "Mom, what happened to your (jewelry, photographs, pots, pans, tools, heirlooms, etc.) ?". She would reply, "Oh, I gave it to so-n-so." People she barely knew! When we packed up what she had left, to move her, she had one suitcase of stuff, mostly medical supplies and clothes. Since she had moved into a furnished apartment and given away all her furniture, the rest was papers and trash.
The big issue with my mother was her diabetes and health. She would eat an ice cream bar, because her sugar was low, then, take insulin to bring it back down, because her sugar spiked, and then, do it again, several times a day!!?? I tried to bring her meals, but she would not eat them. No matter how many times I told her she could not keep doing that, she would not listen. Unfortunately, I had not power to stop her. It is so very hard to try to explain things, over and over, when they do not understand or choose not to listen.
My brother has full legal custody of all her affairs. They have regulated her diet to the point that she is no longer dependent on insulin and her health is normal for her age. I am forever grateful for his devotion to care for her. However her dementia has progressed to the point that they are considering placing her in an assisted living center or nursing home.
Keeping you in my prayers.
God's, are Life.
Posted 29 April 2012 - 03:07 PM
Posted 29 April 2012 - 07:38 PM
The guardianship did go through without a hitch, although the judge did request some minute change in the paperwork. I am waiting for my copy so I can take it to the bank and change things over to eliminate my dad from having access. I want it ASAP so we can get things set up next month's SS & VA monies come in.
I did make doctors (regular MD) appointments for both parents next week and will be going with them. They both tell me that I don't and shouldn't be there, that they don't need me or want me there. Um, sorry mom and dad, but I need to be. I'm under court order *to be* present and get a handle on their health and affairs because they can't and won't.
We are getting complete physicals for them both, referrals to a diabetes specialist for my mother and referral to a urologist or whatever specialist necessary for my dad and his prostate issues. I've also called ahead to request a phone call pre and post with the physician. It's amazing what can be done with a simple paper.
Should they continue to fight me, I have no problem doing what I can and going before the judge in 3 more months and telling the truth, that my parents aren't being cooperative. For some reason, I have it in my head that I have to try it for the 3 months, out of respect. I don't know where I got that from, but I'll give it a go. The bad thing is that the 3 month deadline coincides with finishing my dissertation. It's going to be a crazy few months.
This week's big deal was going 'round with dad about their microwave. Years ago, they bought a very expensive convect microwave. Why anyone outside of food service needs a microwave this expensive, I don't know. To tell you the truth, the thing cost around $600 or $700. Anyhow, it broke. Dad took it in for repair without telling me or discussing options. The reapairs were $120! This was 3 times the cost of the one I have! We had to have a small pow wow about how we need to discuss these things because there isn't much money for this at all. He was put out that he had to discuss it rather than 'just deal with it' and he didn't realize that for the twice a year he uses the convect feature, he could use the regular oven, even though it is dismal. He has a better understanding now, but I know this won't be the last time we discuss money and its uses.
From what I understand, his reaction to the situation is pretty normal of someone with dementia. He's going along patterns of established behavior and is literally somewhere else in his mind. I've been reading about dementia and it's very sad. My heart aches with the knowing that there may come a day when he won't know me or unwillingly endanger my mom.
On a different note, I did realize that I've been doing too much. A friend of mine encouraged me to go out of town and helped me find a screaming good rate at an inn near the coast for a week. I will be gone the 6th through the 12th. I firmly believe it will help me refine my focus and get things done because, Lord knows, I've not been able to get much done here. I hope to knock out some chapters and be on the way to finishing so I can meet my June deadline of being done with writing. I will likely have to return for a week later in June, but I'm fine with that. I've been saving money so it won't be a huge burden.
My husband is a bit jealous that I am getting away without him, but I told him I will be working. I have to get away and work. I promised him a week somewhere, just he and I, when I am done.
On a brighter note, I spent a few days with my nephew working on a 5th grade science project - rock candy! He ended up placing 3rd for his class!
Posted 29 April 2012 - 09:28 PM
It's always good to get away from time to time. Hubby will survive and may even appreciate the new you when you get home.
Have a relaxing time, get some work done and breathe.
You can't always get what you want, babe
But if you try sometimes, you just might find
You get what you need.
~Mick and Keith~
Posted 01 September 2012 - 08:13 PM
Matthew 6:11 "Give us this day our daily bread...amen."
Phillipians 4:19..."And my God will fully satisfy every need of yours according to his riches in glory in Christ Jesus...amen"
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