Some Days Are More Trying Than Others

I'm realizing that all the issues and problems are not solely related to the Parkinson's.

A little over a week ago we bought bunkbeds for the girls and got their room all set up. Three children, even small ones, can fill up a room fast and the bunkbeds helped more efficiently use the space. That meant the double sized bed that was in there had to go somewhere. My sister came and got the head/foot boards and frame but the mattresses are still in the living room! I'm hoping we can get them out this week. It just adds to the clutter.

On Monday, I went over to help Terri finish the clean-up from having moved in. We got rid of all the extraneous stuff, put things away in proper places, vacuumed and dusted. When I was over there Friday afternoon it looked like we had hardly done anything. Mom's mental state is such that she thinks and acts on about a 6-10 year old level on any given day but she is fully aware of the fact that she is 78 years old. She gets a little testy when I try to neaten things up a bit and throw away trash but in my whole life (growing up) things never looked like they do now on a regular basis.

Dad's things continue to be problematic in that he still has boxes and drawers full of stuff that needs to be gone through. He brings up a box or load of stuff from the basement and as he goes through it, item by item, it covers the entire area around the couch and coffee table for days. Then I get the stuff to bring home and decide what gets kept, burned or otherwise given to someone else. He knows his mind is going and he wants to get as much done as possible before the light goes out.

I imagine the mental effects of Parkinson's are similar to dementia and Alzheimer's. Dad takes 3 different medications for that particular symptom but things are getting worse anyway. He's fearful that he will say something to a neighbor or friend that will be bad enough someone will call the police. I told him that if that happens we simply explain the situation, have a chuckle over it and tell them we'll keep an eye on things. What else can you do? He's physically pretty helpless and he reminds me that there are no guns or knives (swords) of any significance left in the house so he can't hurt anyone. Terri called and said that 3 times, the night before, he had tried to make a phone call on the TV remote and change the channel with the phone. I can tell by the way he answers the phone if he's having a good day or a bad one.

So far things are working well with Terri and the kids there. She's realizing that there are things she needs to take charge of, like Dad's meds, both parents' exercise routines and the food prep in order for them to get done at all. She's doing a great job. She's a beauty and a joy forever!!

Going Crazy seems so much easier....for me

Things were really hard today. A little backstory...I left on Thursday for a trip to Texas for my Aunt and Uncle's 50th anniversary. Was gone 5 days and during that time Terri got most all of her things moved into my parent's house. It's a mess over there but we're working on it. Consequently I spend more time there than usual trying to help them all settle in.

Yesterday Dad had a bill that I told him he needed to pay as it was for some lawn services that were completed last month. He had told me previously to work with the guy in charge of doing the work and to just let him know when there was a bill. For some reason he doesn't think the work had been done so he called the company. Then called me this morning to let me know the job had been cancelled and he was paid up. I knew this wasn't right so I called and talked to my contact. He had done the work (he had called me when he did it) and the bill was still outstanding. I had mom write a check while I was there so I could mail it on my way home.

Then, while I was talking to him, Mom and Terri about their situation, he starts talking about how if Rick has Power of Attorney to manage the sale of a house, then if he and mom are found at home alone we could all go to jail for reckless endangerment. I had to explain that the reckless endangerment only applied to us leaving them in charge of Terri's kids and that we were not going to do that. I also had to explain that the POA doesn't mean that he is mentally incapable but that he had given Rick authority to act in his name for some things. These are all things that even 5 years ago would not be an issue.

While looking through a stack of papers I said "oh look, a dollar bill". He said it was earnest money for a house he's trying to sell in Baltimore. He was dead serious. Number one, he's the seller not the buyer so he wouldn't pay earnest money. Secondly, in today's economy a dollar isn't going to cut it for anyone!

It's so hard watching an extremely intelligent mind deteriorate so badly. He does recognize the fact that Parkinson's causes a fair amount of paranoia. At one point Terri told him that she thought he was making a mountain out of a molehill that shouldn't even been there. He chuckled and agreed maybe she was right.

His physical self is deteriorating as well. If he starts leaning in one direction on the couch he just stays that way. Today he was leaning over looking through a drawer for something. I think he forgot what he was looking for and just kind of dozed off without changing position. His sense of humor, which has been a trademark of his, is all but gone. We have to be very careful what we say because nothing is taken lightly or in the humorous way it was intended.

I came away today with a new resolve to be more sympathetic toward my mom. She has always made me crazy but today I saw just how much Dad's ramblings confuse and worry her. We all sat there not knowing what on earth he was talking about. He has always been the one to take care of things, always knew exactly where anything was and could always help anyone with anything regardless of the nature of a situation.

The bottom line is...age and related issues can be problematic under the best of circumstances. My parents, Dad with Parkinson's and Mom with the effects of a stroke, are not aging in a way that I was anticipating. I fully expected to be a large part of their declining years but I didn't realize the toll it takes on the emotions dealing with the physical and emotional limitations they experience under our set of circumstances.

Sometimes I Feel Like I'm drowning...

     Not in the sense that I can't breathe but that the day to day stuff doesn't seem to end. Rick and I are both the oldest of our respective families and the ones most able to help whoever whenever. Last night Rick's dad called concerned about some bills he wasn't sure about. So after church today off he went to see what the matter was. When he got to the assisted living place where his dad is, one of the staff members grabbed him and filled him in on the latest. Apparently, Dad got on his scooter and headed off somewhere NAKED! Or at least just in his underwear I'm not sure. It seems that the meds they're giving him for his heart issues are causing him to do strange things. We're investigating the need for such medications.

     My dad doesn't change much from one day to the next, but there's always something. I think I mentioned before that I'm responsible for his daily meds. We have two pill containers. I fill one and drop it off and pick up the empty one to be returned the following week. Every week, a day before he needs a new batch, he'll call 2 or 3 times wondering what we're going to do about his meds.

     Niece Staci stayed with the parents last week. Dad let me know that she had gone to the shopping center by herself and he didn't think that was good. I reminded him that she is 25 years old, the shopping center amounts to a small strip mall with a grocery store, hardware and furniture stores, and a not-so-hot Chinese restaurant. We don't have vagrants, teenagers, or other people lurking about that may cause trouble. I think she was fine. He was never one to let us girls sit out on the front step as he thought it might give neighbors the wrong idea...about what, I'm not sure.

     The moving in of my daughter isn't progressing as quickly as we would like. It just seems that day-to-day life gets in the way. It's not depressing or anything, it is what it is. The kids are all in school now and Terri and Katy are also taking classes. Rick works a lot of weekends so spending a whole day moving/rearranging things isn't happening. We had planned to get a lot done yesterday but decided to have a party for Terri's birthday. We all loved it! We had a great time visiting with friends and eating some amazing food...no moving got done, no regrets.

     On the up side, Mom is very agreeable to the move. I think she realizes that Terri will give her some emotional support and be helpful with things she doesn't really want to do much anymore anyway. It also helped that we made sure she knew we weren't getting rid of her "stuff" to accommodate Terri and her family. We also made her part of our conversations about where to move things around to make more efficient use of space. Now Dad seems to be concerned that the town may have ordinances about how many people can be in a home and whether or not they might be breaking a law by having Terri's family there. It comes up often enough but we let him know that we don't think there's a problem and don't intend to investigate the issue.

     I love my family and know full well that a sense of humor and God's tender mercies will get us through all this!

    

It's Funny How Often Things Continue to Come Up

     This week has been busy trying to get things done in the Parents home so we can move Terri and her family in. We've made Dad's office/library into a more user friendly place; it's a work in progress and may be for some time. For now it looks really good. I continue to come across pictures, letters etc. of things I haven't seen before. We took the long table out of the library and almost got to the point of pulling Dad's old desk in there. This will make the rest of the room into a family room of sorts for Terri. I'll figure out how to post pictures when we're closer to being finished.

     Dad sometimes comes downstairs while we're working. I often wonder if he does it because he wants to see what we're doing and visit, or if he wants to make sure we aren't tossing things with reckless abandon. We have tossed a lot of stuff but so far it's been pamphlets, odd papers and things that should have been thrown away YEARS ago. So much of what he used to use in lecturing and counseling is still relevant but the documentation of such is not. There has been so much newer information in the last 15-20 years and those looking to follow his footsteps won't use the old information as references.

     Well, today was one of those days. He came downstairs and sat in the only good chair that currently occupies the room. Terri and I are working with piles of books, phonograph records and loose "ash 'n trash" on the desk and surrounding area. Sitting there he says, "you know, with this area's German heritage (some Coffmans mostly), I wonder if the museum might be interested in the beer stein collection".  Holy moly!! How many times is this going to come up? "No, Dad. David gets the steins. We've all talked about it and for a number of reasons he wants them and gets them. The only rule is that he has to come get them, we're not going to mail anything." "Well, that makes sense - there's no time like the present. When is he coming this way?"

     As far as his "condition" is...it's getting much better. The home-healthcare nurse said it would still take some time but it was improving. Currently, we are without scheduled appointments until the 17th of September for a follow-up.

Time For A Change

     My daughter, her 3 children and I left to go to visit my sister in Missouri on the 21st. On Monday my daughter-in-law took my Dad to his scheduled Dr.'s appointment. She called me later that night to let me know that Dad had scraped his backside last week sometime and it had become grossly infected. She took the bull by the horns, so to speak, and took over. During the next few days there were multiple appointments with two different doctors (one a surgeon) in trying to curb the infection and properly stabilize the wound. Katy was very thorough, not only in her care of Dad (regularly cleaning and dressing the wound) but also in keeping me posted long distance.  She and my son kept a close eye on both parents as my Mom was clearly not able to handle things.

     In light of these events we had long talks with my husband, my sister, my daughter and my son and his wife. It has been decided that Terri and her children will move in with the parents. There are lots of reasons why Terri is the most appropriate one to do this:

• She's single (divorced) at the moment so is easier to accommodate, and she's WILLING!
• Her children will all be in school during the day and usually with their dad on weekends so won't be too much of an added burden on my parents' mental capacities
• She already spends a lot of time there between taking Mom shopping and cleaning the house twice a month and various other things she does.
• My mother thinks Terri is the most wonderful thing ever and will listen to her when she won't anyone else

     When we (me, Terri and Katy) explained to my parents what we wanted to do we had already talked about so many things that it wasn't difficult to lay out our plan.  My mom had a bit of a conniption as she doesn't see that there is any problem at all; in spite of the fact that she burned the salmon patties so badly that they couldn't be eaten and then gave Dad a grilled peanut butter and jelly sandwich for dinner the following night. He has mentioned several times in the last year that he is more afraid of dying from food poisoning than Parkinson's!

• Mom may not need attentive care at the moment but Dad does
• If Terri is there she can help with anything, day or night. One of our concerns now is that if something happens to Dad in the middle of the night, will Mom be able to get it together enough to call the appropriate people i.e. family, EMTs etc.
• They need more day-to-day attention given to meals, laundry and general upkeep of the home
• With someone else there, they can stay in their home and, at the moment, not even think of having to go into assisted living care or anything else.
• We all really don't want someone to stay there that we don't know
• If Terri gets up and notices Dad is having a bad day she can call me before she leaves to go anywhere and I can fill in.

     The conversation went rather well in spite of Mom's perplexity. I had to take Dad to an appointment so we had a long time to continue talking about it. He seems very happy with the plan and we'll work to that end. Terri was doing her usual cleaning while we were gone and she said that Mom was a lot more agreeable by the time she was done. Mom kept saying how they could do this or that if she was there so it looks promising.

Well, that should catch everyone up on this episode...I'm sure there will be others forthcoming!

We Talk About Death

     Dad talks about death all the time. He says he had something happen where he heard a voice saying very clearly, "you've spent your whole life helping teach people how to live. Now it's time to teach them how to die." He's very comfortable and not at all maudlin about it.

     A couple of years ago I went with him to buy his and Mom's burial space. I say "space" because they have a hole in the mausoleum wall of a cemetery in Harrisonburg. Mom refuses to talk about it any more than absolutely necessary so I went with him. Besides neither of them drive anymore.  It went well and all things were talked about and paid for. Mom is happy because she has this thing about being buried underground where bugs and things can get at her. She liked the fact that she will be about 5 feet up off the ground.

     I went to the funeral of a good friend last week and came back to my parent's house to report. I said "Dad, I've got your funeral day all planned!". "We'll have the service at 11:00 followed by the grave site service at 1:00. Then everyone will be invited back to the church (the address will already be in their GPs) to eat and visit for as long as they want. We'll have it catered and tell the catering people that all we want is for them to bring the food to the church and then leave. We'll take care of clean up and everything. This way, those coming from Maryland can visit with mom and she can go home whenever she wants with no mess and no fuss going on there." He allowed as how this all sounded like a good idea.

     He has a good friend that he asked to write his eulogy several years ago. John has already written it and sent Dad a copy for his approval! He worries about getting all his papers in order and doesn't want anyone to be put out or worrying about any untied loose ends.

Phone Calls

     Ok, it's been a while since my last post but I had to think this through. I don't want any of my posts to sound like I'm complaining because I'm really not. My husband is my sounding board as he listens without judgments and not too many comments. But for this to have the desired effect, for me and others, I think I still need to write it out.
    
     I've come to the conclusion that Parkinson's and Alzheimer's have a lot in common. Dad doesn't totally zone out but he does forget things and the rehashing doesn't always bring the same results, but usually does. I've started calling these things "Parkinsonian Events".

     Dad owns a house in Baltimore that we would have held onto but it has become problematic and he has decided to sell it. I told him that Rick and I both thought that was a good idea, all things considered. The next day he called and wanted to talk to Rick who was at work. He said he wanted to ask him what he thought about selling the Baltimore house. The next day he called and asked if we wanted to handle the sale. NO! Get someone who LIVES in Baltimore and knows the area. We are about 3+ hours away. I think that issue is settled for now.    

     Yesterday Dad called and told me "the Louisiana relatives should be here Friday around noon, now when are you leaving for Missouri"? We're leaving on the 21st right after church. "And when are you going to Texas?" From the 12th to the 16th of September. This afternoon he called..."now, the Louisiana bunch is due here tomorrow around noon right?" Yes, that's what you told me yesterday. "And you and Terri are leaving for Missouri when?" The 21st. "Your going to Texas by yourself when?" The 12th through the 16th of September.

     Another development is Dad is so afraid of forgetting to dispense his meds properly or order new prescriptions, that I've taken over that task for him. All the meds are at my house and I take care of all reorders and pick-ups. We have two containers that hold a weeks worth of pills. On Mondays I take a new (full) one and bring home the empty one. Then repeat the following week. His concern today was "what's going to happen while you're gone?". Well, I'll leave two full ones so there won't be any lapse while I'm gone.

     It's funny because, with my Mom's issues, she and Dad often say things that cause one to look at the other as if what they just said is totally off the wall. Part of the problem is that her long tern memory is shot and his short term memory is likewise. Mom goes shopping with my daughter every week and, more often than not, Dad will call while she's gone!

     My daughter is a life saver and a joy! She lives about 1/2 a mile from my parents. She takes Mom shopping EVERY week. She can do her own shopping in about one and a half hours including travel time. With Mom, she is usually gone over 4 hours. Mom can't walk very fast and, even though it's just her and Dad, she has to peruse every isle and buys way too much. Terri is compensated by the fact that Mom fills up her car's gas tank and they go through some drive-thru for lunch on the way home. Terri also cleans their house every other week as Mom just doesn't see as well as she used to so a lot of things get missed.

I'm glad the relatives are coming tomorrow as they will keep the parents occupied and give them something to do besides worry... for a few days anyway.


    

Beer Steins

So...my family lived in Germany in the early fifties and Dad collected a few beer steins. They're interesting but not anything I particularly want. My brother, Dave, was born there and spent about 3 years there with his family in the mid eighties. Because of Dave's association with Germany, and maybe partly being the oldest son, it was decided some time ago that when the time came, he would get the beer steins. None of my siblings have an issue with that and my dad was pleased with the agreement.

Well, one of the problems with Parkinson's is short-term memory. Dad called last week and asked if I thought the local (Timberville) museum might have an interest in them! NNNNOOOOOOOOOOO! "Dad, remember, we already decided that David should have them"  "Oh yes, well it was a thought as the Coffman family is strong in this area and the steins cross over that family. But no, David should have them."  My mother is a Coffman, and some of them did settle here before heading to Tennessee but the fact that they may have connections with any of the beer steins is so far of a stretch that it defies reason.  The beer steins remain safe...for the moment.

Dad called today and wondered if the Smithsonian or some other museum might be interested in knowing about the beer steins........................................

I'm creating this blog for two reasons...1. because I need an avenue to tell my stories (and sometimes vent a little) about life with aging parents and 2. so that those who may read these entries might find comfort in knowing that there is someone else who knows what they may be going through and respond with their own stories if they so desire.

There are several factors that should be known from the beginning to understand where I'm coming from;

• My dad is 82 years old and was diagnosed with Parkinson's in 1999. He hasn't been able to drive for about the last 4 years. He has always had an exceptionally keen mind, well educated, traveled the world with work assignments, and has served thousands of people in more ways than can be accounted for. Those who know him, even a little, are aware of this. His mind, due to the disease, is declining. This makes for a lot of frustrating, sad, and sometimes funny situations. He often says "it's hard to watch a mind deteriorate from the inside". 
•  My mom is 78 and had a stroke in 2005. She recovered fairly well with, what seemed at the time, only a lack of peripheral vision. The doctors said she was left with a deminished mental capacity. As the years have passed even this is in decline and she hasn't been able to drive since. Those who know her well notice the differences, those who didn't know her before the stroke don't notice a thing.
• I'm the oldest child, the one they live closest to (about 8 miles) and the one able to take care of things. I couldn't do it without the love and support of my husband, who is often a willing participant in the helping, and 2 of my children who happen to live about 1/2 a mile from my parents.

Sometimes my posts will seem rambling and sometimes there may be background stories...who knows! This'll do for now.