emotional health

The Dog

/ Shirleyjdietz / 1 Comment

Our story in this season of sickness…

As his imaginary world becomes more entrenched the husband is always asking me where his dog is. He mentions this dog at least once a day, and this morning it wasn’t just a curious inquiry, it was a need.

It was early in the morning and he was being moved and cared for, but it was upsetting to him. The words were quite clear. “I need my dog.” It was repeated with conviction. “Where is he?”

I have gone the route of explaining that we don’t have a dog, but that he has seen a dog in his mind and that’s okay. That doesn’t seem to help lately, so I have begun telling him that the dog is probably outside since it is not in the house. People take their dogs out in the morning – they have to pee. His dog does too. He wants to know if I can see him and I say no. I tell him not to worry because he has told me himself that the dog is very smart.

Eventually he will ask for the cat. I can produce a cat. He will hold Shadow on his lap and feel her and this morning he settled down. I am grateful that she does cozy up to him and sit on his lap quite often. She is little and black, like “the dog”.

The cat will have to do.

My theory has the dog being important for several reasons. The husband needs unconditional love at a time when he knows he is unable to give back. It also comforts him to feel responsible for a creature, to still have purpose. Lastly, I don’t know, maybe he always wanted a dog when he was young and never had one. He has always enjoyed some things about the dogs we have had in our years together, but he didn’t have the need that he does now.

His condition continues to decline. I feel there is less engagement overall. There is more confusion, more resignation. One morning last week I asked him if he was okay as I often do when he’s had a coughing spell or seems upset. “Not really.’ he said. He also has started asking me “Am I confused?” These are new admissions for him.

Lest you think that he does a lot of talking, I am recording here most of the significant conversations, and there aren’t many of them. He doesn’t usually talk when we are working with him. His eyes are closed much of the time. He unfailingly produces a smile when asked. Every now and then something will make him laugh. This morning when I told him the dog was outside “taking a leak”, as he calls it, he laughed and said “We’re doing the same thing together.”

They were, and that’s okay.

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The Husband’s New Job

/ Shirleyjdietz / 1 Comment

Dennis has a new job. I hope he’s up for it because it won’t be easy or short term. His job is surviving rehab.

Yesterday I made my way from the parking garage at St. Mary’s Medical Center, across the skywalk to Miller Dwan Rehab Center. Finding my way in a new place is always an adventure. Knowing and following all the rules challenges me, especially since Covid. Hospitals are built with mazes as their model and so many of the halls look the same. And it’s not like they have a lot of restrooms for the public either. I drive 90 miles to get to Duluth so I make it a point to find them.

A rehab hospital is an entirely different experience from an acute care hospital. I was so relieved at the quietness, low key atmosphere, soft voices and lack of hurry. The husband has a small private room with glass sliding doors, and it’s right in front of a nurses’ desk. He has a window and a nice bathroom. Since he still needs a lot of care, all the regular hospital extras are there – oxygen, suction, monitors and computers, lifts and a fancy bed.

The social services worker assigned to Dennis talked with me, both to get information about our home situation for eventual discharge, and to give information about his stay. We already knew he would be getting about three hours of therapy per day from physical therapy (PT), occupational therapy (OT) and speech language therapy (SLT). There will also be talks with psychologists, chaplains, social workers and of course, the doctors. They all meet weekly on Tuesdays and evaluate each patient’s progress. The social worker promised to give me a report each Tuesday after their meeting.

At this point, they estimate Dennis will be with them for 60 days. I am not surprised that it could take a long time because Dennis is at zero on the independence scale right now. I am surprised and relieved that they are willing to take him for that long as it will give me time to prepare for where he goes next. I am hoping our insurance will cover that amount of time. I haven’t checked yet, and I guess that will be my new job.

Good to be wearing T-shirt and pants again.

No time was wasted by the therapists. They have all had two or three sessions with him during these last two days, mostly to evaluate and set up their plan. He is an exhausted guy and it worries me to see him looking and acting so very tired. Before the stroke he was walking, talking, feeding himself and doing many of his daily activities without help, but I also have to admit that he was already tired and taking frequent naps. What kind of improvement can we even hope for now, given all that he’s been through in the last four weeks? But this is humanly thinking and I thank God that we are not limited to that.

I can tell that Dennis has had a lot of time to think, at night especially. He is often uncomfortable, or cold, or sore from his position which he cannot change himself, and unable to find his call button to get help. As his mind clears he is more aware of his predicament and has started looking for someone to blame. He has landed on himself.

“If only I hadn’t been so stubborn about wanting to do it my way. I didn’t want to take those blood pressure meds. This is all my fault. ” I did my best to talk him out of that one, reminding him that even when he took the pills he had alarming hypertensive spikes, followed by hypotensive lows that nearly made him pass out. But, I totally get what he’s feeling because I also went down that road, feeling that I should have made him take his meds. It could easily be my fault too.

When one of the therapists asked how far I was driving and how often I came, he remarked “I don’t know why she stays with me.” I have never heard him say anything like that before and was actually a bit shocked to hear it. I told him I was sticking around until January because I wanted to be able to say I’d been married for 50 years, then I’d be leaving. Did he laugh? I couldn’t tell.

So you see, he is having to deal with some heavy emotions. He hasn’t been one to admit to depression, even since the Lewy Body dementia diagnosis. I am hoping some of the rehab deals with the natural depression that anyone would feel if they suddenly became weak, helpless and out of control in every way. And I will be reminding him to look ahead as God guides him into a purposeful future.

Our Fourth Winter Begins

/ Shirleyjdietz / 1 Comment
Fight the darkness

It is a stunning realization – we have begun our fourth winter since the husband’s diagnosis of Lewy Body Dementia, LBD. It is hard to say if the things we have done since September 2018 have been the right things, or have been done consistently or for long enough time. It’s just hard to imagine that one could quickly change the course of a disease that’s been in progress for many years. We may not have stopped it in its tracks, but it is clear that our journey is different from most others, so far.

LBD quickly becomes a story told by the caretaker. I remember attending a conference for LBD patients and their spouses/caretakers at Mayo Clinic in 2019 where a patient was one of the main speakers. He did a good job. I wonder how he is now. I have a feeling he was a rare case.

My Dennis used to think and talk about the book he was going to write telling his experience with LBD, and his reversal of the disease, of course. That doesn’t get mentioned anymore. He doesn’t write anything, and sometimes has trouble signing his name. A book is not the kind of project he would have been motivated to finish even when he was well, so it is not surprising to me that it has never even been started. Talking has always been his mode of communication. LBD has not changed that.

He has cognitive deficits that he is aware of, but his personality is intact. His curiosity and desire to learn is still there. His need to teach and share what he knows is still prevalent. He surprised us all over the Thanksgiving holiday by having some fairly deep conversations with several people, in which he almost seemed normal in a “pre-Lewy” way. He listens every morning when we read. He asks intelligent questions and makes reasonable comments. But prolonged thinking tires him out and he no longer tries to convince, debate or argue his points.

I left this morning to take Mom to an early doctor appointment. Dennis was listening to a favorite podcast and started to tell me something he thought was very important, which I didn’t have time to hear. When I asked him at lunch what the important thing was, he couldn’t remember it. He said he was having more trouble with his memory again. It did finally come to him, but he had to ask me to find the podcast for him on his phone and play it over.

*******************************************************************************

I’ve been gone most of the day, taking mom to appointments and for groceries. He sits in his lift chair, silence in the room – a rare occasion. I ask him what’s on his mind, and does he need socialization, from me. He says “no”. He’s thinking about a sermon he heard earlier on TV. I don’t believe him. I sit down and tell him about my day and read to him.

Being “Right” Comes Full Circle

/ Shirleyjdietz / 1 Comment

(It has been suggested by the husband that I write this to his daughters. He has Lewy Body Dementia, and once in a while, it adds to life instead of just taking away.)

We were reading a thoughtful paragraph on humility this morning, referencing people who are always right about anything and everything. Dennis laughed and said something that our youngest daughter had said to him once. “I am right, because I am a Dietz!” It was said tongue in cheek and they laughed at it at the time too. Then he got quiet and continued, “I love our daughters so much. I hope they know that.”

It was a special moment and we continued talking about the meaning of that conversation and why the memory of it sparked such gratitude and love inside his “dad heart”.

During the years our daughters were growing up at home there were so many good times for us as parents and for them as children. There were also times, not so good, when they felt distanced from their parents. The role of provider was always of high concern for Dennis, and required a lot of his attention. Maybe small people (children), having limited experiences, were not as interesting as other friends and business associates. He never intentionally conveyed this to them, but it was conveyed nonetheless.

In addition it was natural to assume that children’s opinions, reasons, and thought processes were still to be directed and molded, not listened to and considered. This attitude also was never intentionally spoken, nor was it applied 100% of the time, but over the years it was felt, sometimes acutely. Although Dad provided well and loved them, he didn’t know them personally and was often clueless as to what they were feeling. Perhaps they heard more of “don’t leave toothpaste in the sink” and “your lights were left on – go turn them off” than the things daughters need to hear from their dads.

So what does it mean when a daughter can tease, laugh and point out some hurtful flaw when talking to her dad? What did it mean that she could remind him of that “always right” attitude in a gentle conversation (well, I don’t actually know how gentle it was or what it was about because I wasn’t there…)? To him, it meant forgiveness. It meant that she wasn’t afraid to remind him of that proclivity of his. It was acknowledgement and grace extended. And it was love.

The husband has mellowed so much in the last few years. Retirement has put the distraction of being a provider behind him. He fully realizes those things he has missed by not being more aware, more curious, more persistent about knowing his children. He has also been diagnosed with a heartbreaking condition. But it has turned into a blessing. It’s almost as if his heart had to be broken in order for him to know what was in it. It’s amazing to think about.

Although he is disabled, he has traveled long distances to see each of his two daughters get married, during pandemic times. He would not have missed these opportunities for the world. “Being right” has come full circle and is now much more like “Being in love.”

It provides hope for us all. We can grow, learn, change. The whole story doesn’t have to be pretty for the outcome to be good. God be praised for his transforming power, his gentleness and his wisdom, and his mysterious ways.

Telephone Tribe

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I’ve just read a post in the online support group for dementia caretakers that made me think. It was about how those with a diagnosis of LBD, who have been good friends with many in better years, don’t hear from their friends any more. Actually it was a caretaker writing the post, who was sad that the friends didn’t even contact her to ask how her husband was. She was wondering what their excuses were. Were they unable to handle the changes they saw in him? Were they afraid dementia was contagious, or that they would somehow get it? Did they think that their absence wouldn’t be noticed by anyone so why bother?

My husband who has Lewy Body Dementia is probably not your typical dementia victim, because he has refused to let people forget him. He calls them up if he knows their number. He hunts them down if he doesn’t know their number. He calls them again if they don’t answer the first, second, or third time he calls. He checks up on them even if they don’t check up on him. He remembers what they’ve talked about. These people are his past business associates, the members of the band he used to play in, and family members.

Many times I’ve listened to the conversations (he is always in the living room and doesn’t try to keep them private). Sometimes I cringe when I hear him repeating the same story to someone who has heard it all before. Sometimes I feel sorry for the person he calls because he talks so slowly and often has trouble hearing. Sometimes I wish he wouldn’t try to sound like an authority about other people’s problems, or misquote things he’s read, or be so simplistic about things I think are much more complex. But at the end of it all, I see that there are those people who do take his calls anyway. There are some who listen to his stories, even if somewhat impatiently, and respond with interest. Some tell him that he has encouraged them, given them hope. They are his telephone tribe.

I hear patience in their voices when they talk to him, laugh with him, ask him questions. When they don’t have time for his hour long versions, they tell him they need to go in a few minutes. They set limits in kind ways and show respect. They call him back when they say they will or apologize if they forget. They continue being good friends. They know they are doing something for him that friendship is supposed to do, and they are not afraid, not too busy, not “turned off” by the changes dementia has brought to him. I am so thankful for those friends, because they also help me. I am thankful to have married a man who chose his friends wisely. If you are this kind of friend, thank you.

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.

Post-Mayo Clinic

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Thinking it Over

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know.  At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all.  I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him.  I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea).  We’ll see how that works out.  It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that.  The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm. That’s it for tonight.