caretaking problems

Mattresses, Heat/Cold and Hair

/ Shirleyjdietz / Leave a comment

9-6-2019

It has been a week since I last asked myself how we are doing. Funny how it is easier not to do that too often as it could lead to incredibly sad thoughts.

Dennis still thinks he is getting better, or at least holding steady. I think he is doing well cognitively but his motor problems are still there and worsening some. We can sit and have fairly reasonable conversations. He is able to talk about his condition without as much denial, although he still has to try to figure everything out – every new symptom, every change in the old symptoms, figure, figure, figure…

Since returning from the meadow to the condo he has tried many different sleeping arrangements, in search of the perfect, comfortable night. He never quite arrives there.

For a while he slept in the master bedroom, but immediately there were issues with the bed being too high. We have different temperature preferences as well so I would end up sleeping in a recliner in the living room just to keep cool.

He moved to the guest room and for a while I thought we had a good thing going there, but no. Soon the mattress was too soft and he couldn’t turn over. There was no solid surface to push against.

The search for a firmer mattress took him back to the master bedroom. It also has a smaller twin bed that he slept in several nights before he began to be uncomfortable. He had his back injury by this time and had difficulty getting in and out, or moving at all. He would lie on one side only all night and that side was getting sore. But the smaller bed gave him no room to turn around without hitting the wall. He also was noticing the amount of drag that his clothing gave on the sheets. Every time he tried to turn he would either lose his blanket completely or get tangled up in it.

Next he remembered an offer of a firmer mattress to exchange for the one in the guest room. My brother and I hauled the mattresses back and forth and surprisingly, it resulted in a lower bed, a firmer mattress. I thought it would be perfect. He practiced rolling from one side to the other. He measured the distance to get his feet up on the bed, and the distance he sunk down when sitting on the side (he does this on all beds now – the firmness test).

Having discovered the blanket problem, he now decided to sleep without them. This is when he started measuring the temperature of various parts of the room with his infra red thermometer. It was too cold for sleeping without covers. We had to get a heater, which we did. Keeping the door closed was also necessary to keep the heat in so, for safety sake, we also had to get a monitor so I could tell when he needed help.

It took several nights of trying the heater in different places – a chair was too high and made the floor cold and the ceiling too hot. The air wasn’t mixing right. He cannot be in situations like this without reverting to his lifelong career of figuring out why air does what it does. This morning after getting up he asked me to go into his “incubator” and measure the temps – 80 degrees F on the ceiling, 78 pretty much everywhere else. Perfect. You would think.

Another spin off from his “out of whack” heating and cooling system is his desire for longer hair. Winter is coming and his head will certainly get cold. He has resisted having it cut and also doesn’t want to shave his facial hair. He was looking quite shaggy and unkept the other day when we went into Dairy Queen to buy a couple dinners. He sat down to wait while I fixed our drinks, which I put in the truck. I told him he could go out and get seated and I would wait and bring the food when it was ready. He went out. The people at a nearby table were concerned and about to follow him out and bring him back, since his appearance and way of moving signaled that he was obviously not all right in the head. They were afraid he was running away and would get lost. Wow.

The good news is that today I convinced him to get a haircut. My nephew has recently started work at a barber shop in town and I framed the outing as a chance to encourage a young person in their career. That is definitely something that Dennis responds to these days. It gives him purpose and a way to connect with someone other than his wife – me. I’m also grateful for that.

He looks pretty spiffy now, hair cut and beard trimmed. Definitely worth the price.

Disappointment

/ Shirleyjdietz / Leave a comment

8-25-2019

As I have written, he decided to run because he could. Well, it seems that he shouldn’t have assumed that he could, not without consequences.

His back became really painful as his muscles responded to the “running”, which made him remember the chiropractor, and how long it had been since he’d gone for an adjustment. We went twice last week and he got enough relief each time that he was very impressed with the chiropractor and how much he knew. Still, he had problems that returned each night as he slept.

I say “slept” but I’m starting to wonder if he does get much sleep. He tells me in the morning that he has been awake to go to the bathroom nearly every hour. He no sooner gets back in bed, than he has to go again. It’s almost like the act of lying horizontal causes him to feel it.

This morning when I came to ask if he was up and getting prepared to go to church, he definitely was not. Every movement of getting out of bed, trying to walk with the cane, sitting, standing again – it was all so slow and guarded that there was no way he could go anywhere. He does not tolerate pain well. So our plans for the day took an about face.

Not only did we stay home from church, but we also cancelled on a dinner out with friends because he could not get dressed, or ride in the car, or wait for a table. He did not want to be left alone at home either. It’s not that he will allow me to help him or touch him, he just wants someone to stand by if needed, and to listen to him talk of all his calculations about how to move, or why he can’t make a certain movement. I have to keep reminding myself that he can’t help it. It’s the disease.

This is a disappointing setback in our stretch of fairly stable days. I know it’s a bit selfish but, I also really wanted to go out to dinner…

A Necessary Trip

/ Shirleyjdietz / 2 Comments

I know changes of any kind can be very upsetting, both to the elderly and to someone not feeling well, but we needed to travel. Dennis has been very emotional since his LBD diagnosis and at times feels like any moment could be his last. He has wanted to visit his hometown in Pennsylvania and see his family again, one more time. I agreed.

He also is still convinced that our condo is improperly grounded and has an electric field that is killing him. He felt that two weeks on the road might make such a difference in how he felt that he would be using his computer again, doing research, reading, and working on his book project. I asked him to think about what it might mean if he didn’t feel any better after time away from the condo. “It would mean that I wasn’t gone long enough. That’s the logical conclusion.” So, although I will look forward to a return home at some point, he will not. He’s already dreading it and doesn’t hesitate to say so.

The travel to Pennsylvania went fairly well, although it was a bit like traveling with a small child as far as getting in and out of restaurants and the motel. All things seem exaggerated to Dennis and are potentially upsetting. The 10 minute delay due to traffic conditions becomes “the most awful” part of the route, even though it was par for the course to my way of thinking. The pay stations on the toll road were “terribly stressful” and upset his stomach. Stopping for the night caused him to be so grateful for God’s help in solving our problem when I wasn’t aware that there was a problem – it was the plan.

I expected that he would feel exuberant after his first night of rest at his brother’s house, but he was very quiet and wanted to go back to sleep instead of having breakfast at the hometown cafe. He had very little energy all day and fell asleep for a while, surrounded by visiting relatives and busy chatter. He cried when talking to his sister and brother, and kept thinking of things to talk about of a “final” nature. I can see that this visit might take a lot out of him. I don’t think I can do anything to help with that.

Such a Hard Thing

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Such a Hard Thing

6-20-2019

If it were not for hugs, I would not know what to do to preserve the relationship between my husband and myself. Sometimes it is all we can do. We have to quit talking and hug.

We often hit an impasse when he attributes his symptoms to something other than Lewy Body and I remind him that LBD is the most likely cause of most all his symptoms. “That’s just a name. Nobody really knows what it is, what causes it”, he will tell me. Whereas he is onto something big that may prevent LBD and other dementias. It’s something that God wants him to pursue, record and publish.

He wavers. Every now and then he wonders if he has heard correctly what God is saying to him. He will even think that LBD is something God is using to get his attention and correct him in his ways. He will get very introspective and cry. He might even conclude that God wants him to quit trying to convince others and trust instead. But he cannot quit thinking, researching, striving, so the next time fear or anxiety strikes he is right back in the game. There is always a new plan to present to me first, then to whomever he can get to listen and perhaps act.

One morning after requesting a serious talk, he told me that he would never hold it against me, or others, for not understanding. It was his fault for not being able to explain it well enough. I told him it was not a matter of understanding, it was a matter of believing. To him, his theories are facts that others should be able to understand. To others, his theories are just that, theories. And they are not the most likely explanation for what is happening to him.

He often suspects that I have been leading people to view him as unreliable in his ability to think and reason. I get requests to not do this, and especially to “change my song” when talking to him. He gets frustrated with me but is not angry, just obsessed and persistent. For that I am thankful.

He is seeing his illness as a very spiritual experience. He hears God speaking through it, and I agree that some of the things he hears are right on target. He has changed his mind on some important issues. But after he feels he has gotten the lesson and accepted God’s correction, he then looks for physical healing and wonders why God is withholding it. Then doubt, guilt, depression and self pity come rushing back in. He is more in touch with his feelings than ever before in his life. He cries nearly every day.

He is not crazy. He talks knowledgeably about many things. It’s his conclusions and his obsessions that make people question him, and they would do that even if I told them nothing.

Higher Ground Please

/ Shirleyjdietz / Leave a comment

6-22-2019

The last few days… we have been several places away from home seeking relief from the electric fields. We have spoken with electricians, we have prayed and battled spiritually, we have actually changed course and are no longer using grounding pads anywhere.

Dennis has had a couple new symptoms and I’m sure they alarm him. He has trouble swallowing his many pills. They are all supplements so it’s not critical he take them if he has trouble, but since this symptom was addressed at the conference we went to, it is an alarming occurrence to him.

Another surprise, he mentioned hallucinations. He thought he saw me coming toward him out in the field today – I wasn’t. He thought he saw a man outside the window but whenever he turned to see who it was, the man was gone. He said the H word himself.

But mostly it is still the electricity issue that is on his mind – trying to figure out why he feels tingling in his hands, cold extremities, dry mouth but drooling at the same time (???), and changes in his mental and emotional status whenever he is on the property and especially in our condo.

He would explain it this way. The code is written for single residences but our is a duplex. Because of that there are two grounding rods, 10 feet long and 6 feet apart. He looked up the code and found that it was a minimal requirement and didn’t take safety fully into account. He feels that electricity from one grounding rod is conducted through the grounding rod, into the wet ground (high water table) and feeding back into the other grounding rod and into our house through the neutral electric wire. Somehow this translates into the theory that if he gets up high enough above the water table his symptoms will lessen, perhaps go away. The rogue electric current is denaturing the protein in his body and creating more Lewy bodies faster than he can get rid of them with his magnesium water.

He talks these theories/facts endlessly, and I finally am telling him to leave me out of the conversation. I am not going to help him research electromagnetic shielding on the internet. I don’t want to hear about the dairy farms where this happens commonly, according to him. I am not going to try to lower the water table (he has ideas on how) or dig up the grounding rods and pull them out of the water.

As he says, he is sorry to be so much trouble, but the house and really the whole residential development is killing him and he has to get out. You have never seen desperation like this.

Fluctuations

/ Shirleyjdietz / 1 Comment

6-18-2019

I am so glad there has been a gradual change over the last couple of days. I don’t know if has been because I asked him to quit taking proteolytic enzymes for a few days, or perhaps it’s just a Lewy fluctuation. Either way, I’ll take it and be thankful because this has been a stressful week and a half.

Last night there was no begging to go elsewhere to sleep. He slept part of the time in bed and part of the time in the recliner. He came and got me every time he needed to change something and that was a bit reminiscent of my night shifts as a private duty nurse, but over all we were peaceful.

He did want to get out of the house early this morning and go to breakfast at the Family Restaurant, but hey, I’ll take breakfast out most any time. He figured getting away would help him recover from the hours spent overnight in the electrical field. He wanted to sound intelligent at our meeting with the financial advisor at 10.

But breakfast was over by 8 am so he wanted to hang out at the church – just on a whim. It was open (are churches always open anymore? Don’t know) so he went in and fell asleep in the Fireside Room while I spent some time in the dark sanctuary playing with the piano. It was a good choice, and I’m keeping it in mind for the future.

Of course, all this time he was worried about hearing from the electrician. Even though I had called twice, the man was not calling back, not even to say he was too busy to check out our “grounding problem”. Dennis had figured out a new angle during the night and at breakfast he made me write down the specific points he wanted the electrician to check on. So the electrical craziness has not gone away by any means, BUT one of his phone contacts who he greatly admires had told him he was thinking wrongly and he started believing it. The result was that he didn’t have to be on any grounding pads all day, he quit wearing the moccasins with the lining cut out, and he actually thinks it is good now to be insulated from the ground. Go figure…

Tonight he was able to talk coherently, see almost normally, check his own email on his phone, get himself out of chairs and the sofa without difficulty, and was CHEERFUL. Wow. He ate supper and has decided to sleep on the futon in the sunroom, which is fine. Maybe I’ll get some sleep tonight.

Camping Out

/ Shirleyjdietz / Leave a comment

Crazy Day

6-17-2019

I was in such a cooperative mood today – determined to help this guy feel comfortable somewhere other than in the house. I told him we were going to set up camp out in the field. How could that not work?

⁃ Tent has a polyethylene floor so it’s not grounded

⁃ Truck has rubber wheels so it’s not grounded

⁃ Nothing to plug the grounding pad into

⁃ Must find Ohm meter so we can tell if we’re conducting anything

⁃ Must have multiple things to sit on besides the truck, for comfort

⁃ Must have peanut butter, cheese and magnesium water

⁃ Must be in the shade in case it’s hot

⁃ Must have jacket

⁃ Must have head pillow

On and on. We spent quite a while fixing alligator clamps from the Ohm meter onto a grounding spike, which was really a huge wood file I had scrounged from the workbench. This contraption was then attached to the truck to ground it. He figured he could ground himself by holding on to another wire attached to the same spike. When we got out to the field and set up the chair, the snacks, and the ground wires and the grounding pad on the chair, I was all set for a good time tending the garden while he communed with nature and his phone.

Less than an hour later I was getting phone calls. The grounding wasn’t working and he knew why. And then the call that he and the walker had made it back to the house and couldn’t get in – back door was locked (um… try the front door, it’s not.) Next, where is the remote that changes the channels on the tv? Next, bathroom problems. I gave up and went to the house. Later I walked back to the truck, loaded everything up and drove it all back. So much for camping out. Not doing that again.

Grounding the truck, or maybe not.

Exactly What?

/ Shirleyjdietz / 2 Comments

What exactly am I to do?

He came shuffling from the bedroom where he had gone to sleep and found me, still working on the computer. I dread the sound of him coming because I know he is going to tell me some new reason why he has to get out of this house.

“Do you see this?” He hold up his hand with the fingers curled nearly shut. “My hand was frozen like this. Locked. I couldn’t move it.”

His face has “that look”. Haunted, bleary eyed, almost motionless even when he’s talking and trying to be dramatic.

I don’t know what to say. “It’s a movement disorder, Parkinsonian problem. How do you want to remedy the situation?”

“There is no remedy. I have to get out of this place.” He teeters and catches himself as he turns and shuffles out again.

I think for a while and follow him into the dark room. We talk. I’m desperate. He’s desperate. In frustration I tell him to get his clothes on and get in the truck. I’ll take him somewhere remote and we’ll both sleep there tonight. He refuses my offer. The truck is not grounded, so it wouldn’t do any good.

He’s so good at throwing something crazy back at me, almost like a test, but he doesn’t think it’s crazy at all. “We need to call Mayo Clinic and see what they do for this. They’re here in the Midwest where there are lots of dairy farms with grounding problems. They probably have people with this and know what to do.”

This sounds ridiculous to me, and I know what Mayo Clinic will think when they see his diagnosis, but it is something I can do. I can ask. Will that satisfy him? I tell him they aren’t going to get back to him tonight.

He knows that. “They’ll probably just tell me to get away from the house.”

Yeah, probably.

Father’s Day 2019

/ Shirleyjdietz / Leave a comment

6-16-2019

Today was Father’s Day. It was not a bad day, but in some ways a sad day.

The better part was that we left the house early for church, ate breakfast afterwards at a restaurant, and then stayed outside away from electric fields all day. At least that was the way I saw it.

Dennis talked to both his daughters on the phone today and listening to those conversations was the sad part. He has changed so much, even in the last two weeks – rambling, sometimes confused, distracted by clouds or his own thoughts. In his account of the day he mentioned a major mistake he (we) made. I didn’t agree, but it made no difference.

I decided that since we had such a nice rest in the truck the day before, why not just drive our truck out in the wetland meadow behind the barn and he could spend as much time there as he wanted. Why not, indeed? So we did that, found a nice shade tree to park under, repositioned the truck several times, rehearsed how to open or shut windows and then I left. He could call me on his phone if he needed anything – I would be only a short distance away.

He stayed there several hours while I did my cleaning job and only called me twice. I went out to check on him and he was so busy talking on the phone that I left again and went to the house to do chores.

His next call to me was about his mistake. He hadn’t been thinking and had wasted a few hours already by not being grounded. The truck, having rubber tires, is not grounded unless a chain or something metal is touching the earth. He was having to get out of the truck and put his feet down and walk around to remedy the situation. Could I bring the walker out so he could sit on the seat and still have his feet on the ground. Yes, I could. I even brought him a snack and his magnesium water. After all, it was Father’s Day.

I heard him repeat the story twice to our daughters later. After hearing it the first time I asked him why he needed to be grounded if there were no electric fields, no EMFs in sight, but he didn’t answer – just shook his head. I guess I don’t really understand electricity (along with a lot of other things…).

Walker with seat attached

Not so long ago he would never have been caught using this. Now it is his best friend.

He’s a Scientist

/ Shirleyjdietz / Leave a comment

3-11-2019

Shortly after I came down with this cold that’s making me miserable, the husband started something very similar, but of course, he doesn’t have a cold. He is going through a phase of autophagy, clearing out the trash and hopefully getting rid of some Lewy bodies. He thinks it’s not a cold because his nasal drainage is clear. I’m skeptical, as always. Looks like a cold to me. His magnesium therapy is the cure all for everything, if you believe all that he says.

Last night I went back through my emails and wrote down all the papers and research articles he’s sent me over the last five or six weeks – 27 in all, none of which have I read. I intend to read some but I guess I’m reacting somewhat negatively to his obsessive behavior and preoccupation with his sickness. I get overwhelmed. Every conversation with him ends up connected to his health, his therapies, his symptoms. He is emphatic about supposed changes that he experiences, many of which are questionable. It goes beyond his own experience when he decides that everyone will benefit from his therapies by doing the same thing he is doing.

I am toying with the idea of going to Seattle for a short visit, not that I want to travel, but because I want Esther (daughter) to know I care about her. Birthday week is coming up and it’s always hard to spend it alone with no fanfare. I’m not sure I should leave Mom to deal with the husband by herself. She is sensitive to his plight and feels bad that she doesn’t want to listen to all the things he wants to talk about. I’m not sure how to communicate to him how he would have to change in order that she feel comfortable. I tried but now I think he is feeling awkward, that maybe Mom doesn’t like him very much. I wish there were someone he could go live with for a few days while I’m gone.

He needs help all the time. Not for complicated things but for small stuff, like putting spaghetti in a dish and heating it up in the microwave. He gets “fog” and can’t think what to do if the spaghetti noodles are cold and stuck together. It frustrates him.

I was asking him to cut his fingernails recently. When I see them so long that they look like girl fingernails it really repels me, so I get the clippers out, ask him if he will do it, and then wait. I asked him if there was anything about the job that made it hard for him to want to do it regularly. He seemed genuinely happy to tell me that it was hard for him to see what he was doing, and hard for him to press the clippers hard enough to get the job done. I clipped them for him.  I also shaved him last week since he was having a hard time getting all the whiskers and would leave them in weird places, quite visible. Some of these things wouldn’t be so hard if he would keep up with them on a regular basis, but he doesn’t have a habit of doing that.

Yesterday he was very emotional. He wanted me to know that he felt I was in a dangerous position if I were to decide to treat him like Job’s wife had treated Job. I wasn’t too thrilled to hear that comparison. He did go on to explain that he was getting a lot more sympathy for what the woman must have been experiencing and that he could see the temptation for her to lose patience.  The wrap up of this discussion had him sitting on the end of the bed, weeping, and telling me that he felt he had changed and wanted to make amends for the times that he had not been there for his family in the past. He wanted me to know and believe that he had changed. And I do believe his thinking has changed. It’s a start, but behavior is largely determined by habit.

If Dr. Carolyn Dean is correct about the magnesium deficiency that all of us are experiencing, here is the list of maladies I hope to see changing as I ingest more of it.

  • The ringing in my ears
  • The pain in my thumb joint
  • The sinus headaches
  • The funny numbness in my feet
  • The white patches on my forearms
  • The more common hypertensive readings on my BP
  • A faster recovery from this cold
  • Resolution of knee and hip problems, before the hike, please
  • Better sleep

I realize it’s all connected and very complex, but why not put it all down and watch to see what happens? Meanwhile I will do what there is to do – exercise, try to eat well, keep good hours, keep happy and avoid stress. Shoot for the moon.