House Arrest

PUT YOUR HANDS UP, YOU'RE UNDER ARREST! screams the toy my grandsons are playing with.

I had to laugh at that because as a full time craregiver much of the time I feel like I'm under arrest, house arrest.

In the early days of Hubby's Lewy Body diagnosis he still had the ability to drive. He would go only into town for coffee and back. I was blessed to be a stay at home wife and mother for many years so I had the freedoms to run errands, grocery shop, have lunch with Hubby's sister and dilly dally. I even joined a woman's gym as I knew I would need all the emotional and physical strength I could get to be a good caregiver. It was business as usual.

Hubby started driving less and less and sleeping more and more. Still confidant that he could reach me if he needed to (his cell phone was always on his side) or just call me and see what I was doing, as he did often even when I was at home,  the concern of him being alone wasn't that great.

Once Hubby called me at home and asked me where I was. LOL
I said I was at the house where did he think I was?
He thought I might be in town but I again told him he called the house and I answered the house phone so I couldn’t be at town.
He never did understand why I couldn’t be at town and answer the house phone.

Hubby was always able to call me even when he couldn't remember others numbers.

Eventually being gone became a concern just because of the confusion issue. I would always stay close enough that I could get to him fairly quickly if needed. After all, errands still had to be run and groceries still needed to be purchased and the dilly dally time started fading. If I knew I had to be gone a greater distance than ordinary I would have his sister or our son call and check on him.

One time my sister called me while I was gone and he answered the phone.
He had told her I was in Kansas. (Kansas is 2 states away) She reached me on my cell phone and asked me about it. LOL!

Then one day the scary happened. I had taken Hubby's sister to the Dr. We had lunch and picked up a few groceries before heading home. When we arrived she popped in to say hello to him. He was still in bed which was not uncommon. When she spoke to him we could tell that he was trying to figure out who she was by the way he looked at her and the pensive hello she received. I felt so badly for her.

After she left I gave Hubby a kiss on the forehead and he acted like I sent electrical shock waves through his body and he grabbed his forehead. When I asked what was the matter and he tried to tell me his head hurt. I turned on the light to examine him closer and he had a bump and red spot just over his eye. I started twenty questions and by process of elimination deduced he had fallen down but he didn't know what he hit.
I examined him for limb movement and other visible signs of injury. Thankfully there were none.

Now I was concerned. All the horrible "What if?'s"  crept into my mind.
It was then and there that I made the decision to never leave him alone.

Because Hubby has a service connected disability with the V.A. he qualifies for home health Care.  5 X a week, 10 hrs week, 46 hrs a month. Until all of the 'red tape' was ironed out and that "Wash Woman" arrived I was dependent on other family members help so I could at least run to town and grab some milk and toilet paper. We live 9 miles from the nearest grocery store.

When that "Wash woman" arrived it was if I could breathe again. I had 5 days a week for a little less than 2 hrs a day. I was so happy to have it and to this day still am. Once a month I again asked  family to give me a break so I had a little longer time for some things.  For a short while it worked out but then our sons work schedule got changed to crazy days and hours and planning anything was impossible. A young family of his own to be responsible for prompted me to not want to take his time away from them.
Other family became busy and unable to help unless it became a have to situation. Like the time I ordered pizza for our church youth group that needed picked up and he REFUSED to get dressed and go. But that's a whole other story.

Slowly and slowly I started feeling locked up as Hubby wanted less and less to leave home. The mad dash to do errands had started to take it's toll as time shot by so quickly it felt like I was never getting anything accomplished or forgetting things on  my list. If it wasn't a top priority it got scratched.

I couldn't just run out the door as soon as the aide arrived, she needed to know how he was and what was needed for the day.Our nearest Big City for us, is about 20 miles away so a 20 min trip to and from killed an additional 40 of my mins. And have you EVER tried to buy groceries at Wal Mart, check out and get out of the parking lot in less than an hour? It can be done, just not without it's anxiety. I don't go that far unless it's big time shopping I need to do so our local grocery at higher prices and limited selection has to do.

Fear for Hubby's safety overtook me and I started staying inside the house or carried a monitor outside so I could hear him if he needed me. Mowing became a few min at a time job and then back to check on Hubby.
Even walking in the driveway was stressful :-/ I couldn't overcome it. 

I learned to do shopping on line. I found Schwans and they deliver meals and some food products.
The cats have learned to like a different brand of cat food and so have the dogs.
Our baby daughter got married and I planned the entire wedding sitting in front of my computer. It was beautiful.
Christmas has come and gone and I did the majority of it from on line also.
The computer has become my life line to the outside world.
Even the support group I cling to like a life raft is on line.

BUT this isolation comes with a price. My stress level took a leap. As a result I over eat so I have gained quite a bit of weight (I am working on reversing that now). I started having trouble breathing easily and my emotions sit right behind my eyeballs.

I wonder if I have arrested myself and now I am my own jailer.
I need to find a way to break free from some of the bonds I have placed on myself.
One of those bonds is leaving the house to walk in the driveway while Hubby sleeps.

I am slowly overcoming that one.

Caregiver care is vital. Sadly we are the last to care for ourselves.

For the most part I am content and doing the best I feel I can with what I have. I feel blessed to even have what I do. A loving family, a prayerful church family, a break to get necessities, a husband that is not distressed, angry or fearful. For those things I am truly thankful

1 Thessalonians 5:18 (New International Version)

¹⁸give thanks in all circumstances, for this is God's will for you in Christ Jesus

Week of Smiles 1/18-1/24

Jan 18: Hubby slept ALL day except to eat supper then stayed up ALL night.

Jan 19: Even after a night of no sleep Hubby had a wonderful, physical day. Mentally he was struggling. We went to and enjoyed lunch. Lunch dates are very rare and considered a great treat by me :)
   We ran into an old friend and visited. Hubby kept asking our friend if they knew where we lived. I assured Hubby that our friend did know as he was one that helped us build our house.
  Satisfied in knowing he occasionally joined in the conversation when asked a question but mostly sat quietly eating for the duration of the visit. Hubby told our friend that he is making plans to do some 'things' although I have no idea what those 'things" are and Hubby would/could never elaborate.
  I am happy he has something he looks forward to even if they never come to light.
  Today he is happy and content, just wishes it wasn't rainy :)
  Today, all day, Our world is good. :)
  Now he sleeps.

Jan 20: Could care less about anything else good that happens today. After taking Hubby something to eat and before I walk away I always ask him if he would like a kiss and I remind him that I love him. I always ask if he would like one because most of the time he doesn't know who I am. Once when I attempted to kiss him in front of his aide he backed off. I try not to make the mistake again of putting him in an "awkward" situation or me in a heart hurt one.  Today, after we kissed HE told ME "I love you". THAT IS EVERYTHING!!! His mind may not remember who I am but I think his heart remembers ♥

Wish all our days were like Wed. but they are not.

Jan 21: Long quiet day for Hubby and I. He barely spoke when he was up and just stared out the windows. When I finally crawled into bed for the night I was careful not to disturb him. I could feel his breath on my back :)
A friend summed it up perfectly for me in a comment

"How blessed you are with the calming affect of breathing to lull you to sleep."

She was so right :)

Jan 22: Hubby asks me quite often if I hear from the kids. Today I talked with all 3, relayed hellos and love to him. He was very pleased :)

Jan 23: Boys will be boys and so will men!! Silly Hubby was sitting on the stairs while I was outside sweeping the porch while he slept. I had no idea he had gotten up and was anywhere around until he grabbed for me and yelled BOO when I walked in the door!! Scared the dickens out of me and I in turn scared him when I yelped LOL!! Served him right LOL!

Jan 24: I cleared away Hubby's supper dishes and asked if he had enough supper and wanted anything else. He replied, "I guess' Then he paused and said "I don't even remember what we had?" Then he laughed about it LOL!!!

Proverbs 17:22..."A happy heart is good medicine and a cheerful mind works healing, but a broken spirit dries up the bones."

How long have you lived here?

Wikipedia describesThe Capgras delusion

 (or Capgras syndrome) is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member, has been replaced by an identical-looking impostor. The Capgras delusion is classed as a delusional misidentification syndrome, a class of delusional beliefs that involves the misidentification of people, places or objects.

The 's' is silent.

Ever wake from a dream in the middle of the night and find yourself twisted around in the bed and for just a moment you aren't sure exactly where you are? That has happened to me but I was always able to gather my bearings. Unfortunately this is the only description I can give as to what it might be like to have dementia and feel lost in your own house.

Hubby started having house problems before the Lewy Body diagnosis. His confusion as to where we were was mostly at night but just as easily sorted out when he said it. Hubby was aware he was mistaken and corrected himself, in the beginning.

Then he started asking where we were, who owned this place and how we got here. I told him we were in our own house. I asked him where he thought he was and he suspiciously told me I was trying to convince him he was someplace he really wasn’t. He finally told me we were not at (our address). I tried to reassure him we were but he wouldn’t ever be satisfied with the answers and he got up and slowly walked into each room carefully looking to make sure nobody was here and checking out everything.

He eventually became convinced we are in a double wide. (we live in a 2 story house) He can’t decide where it is located or who owns it. Trailer talk was a nightly conversation

“How does this thing go together?”
It doesn't, it's a house
“Who owns this?”
We do
“What’s in that room?”
The bathroom, still
“How did this trailer get here?”
It's a house and we built it
“Where is this trailer located?”
The same place it's always been for the last 15 yrs
etc etc

Now mix in me. My first episode of Hubby not knowing me came in April of 2008, 6 mo. after his diagnosis.
He was looking at me very hard as if studying me so I asked him if he knew who I was and he said ‘No’
Then he said I was his sister. He went to sleep right after that.I was left feeling alone and sad.

Hubby started talking to me about me. I always find it amusing when he does that for some reason
He once told me that his wife had all the sets of keys to the trailer. I asked him what his wife’s name was and he replied that he had so many he couldn’t decide. I asked who he thought I was and he said Kathy. I asked if he thought I was his wife and he said I fit in there someplace.  LOL! Those are all logical statements as I am wife number 4 and my name is Kathy :)

I think our husband wife relationship took a turn the night in bed he got up, rolled over on top of and sat on me. He looked straight at me and asked me, “What was your name?”  I told him Kathy. He said “I thought that’s what it was but I wasn’t sure.”

I'm sure you have all heard the jokes about that happening but it became my reality and for a second it wasn't funny, just very very sad.

Of course I try to cover negative feelings with humor and although I NEVER said it out loud my thoughts were, It doesn't matter. Just leave the $200 on the table and remember, you're getting the Sr Discount ;-)

 After that incident I found it difficult to be intimate with him. Overwhelming in my mind was the thought he might not know who I am or worse, think I’m someone else. My heart could not take that. My affections have changed to a more nurturing love from an intimately passionate one.

The strange house and the different wife are not scary issues for Hubby. Hubby seems to accept the fact that most of his furniture is here in this strange house. It's seems perfectly fine to him that he has another house "just like this one" but does not live in it. He is OK with the fact that I live here and take care of him and he lives with me. He knows I am his wife but doesn't remember getting married to me and since everyone has told him we are married he just accepts it.

So in looking for the good in these situations I must say Hubby feels safe and content today. He is not stressed nor agitated about these things. He never tries to leave or wander off looking for the other house. He knows if he needs anything I am here for him and that in itself is a blessing.

That Wash Woman

Sometimes,
OK lots of times,
Hubby can not remember the name of his personal care aide so He calls her That Wash Woman.
She and I think it's very sweet :-)

Our life before her;

Hubby has gradually forgotten how or was unable to perform his basic care needs. There are times he can function quite well in remembering them but less and less. Shaving was one of the first to go. Mostly as a result of his shaking and trying to use a razor. I purchased him an electric shaver to use but eventually I started shaving him. Hubby is a fall risk so I took measures in trying to prevent that by placing anti slip strips on the bottom of the tub and I purchased him a shower chair to sit on while taking a shower. I also installed grab bars. In addition to what I purchased, the Veterans Assoc supplied many medical supplies that Hubby needed or would need in the future.

Concerned with falling, helping Hubby in and out of the shower was all that needed to be done with shower needs. As Hubby lost the ability to wash his hair and tipping his head back caused him dizziness I started helping with that. Now you wouldn't think that would be such a difficult job would you? Well I assure you that it is very different than sharing a shower ;-) We were both drenched along with the floor and everything else around us. It looked more like a dunking than a seated shower. :-)

We ,OK OK, I, eventually got the hang of it and shower assistance went much smoother.






So now more things to add to my list of caregiver duties.
Some days it feels like raising a child in reverse.

In the beginning leaving Hubby at home alone wasn't a huge ordeal. He was never without his cell phone and was always able to call me if he needed me. I wouldn't be too terribly far from being able to get to him myself or call emergency personnel if necessary. On the rare occasion I was a great distance away I would have our son call and check on him. I felt comfortable in doing this UNTIL
a day of shopping when I returned home Hubby was asleep in bed when I returned, That was normal.
I woke him and let him know I had returned and gave him a kiss on the forehead and he acted like I sent electrical shock waves through his body and grabbed his forehead.

I asked what was the matter and he tried to tell me his head hurt. (I guessed, go me!) I turned on the light to examine him closer and he had a bump and red spot just over his eye. I started twenty questions and by process of elimination surmised he had fallen down but he doesn't know what he hit. I surveyed him for other damage and limb movement.

Then it hit me like a panic, All the horrible "what if?'s " crept into my mind. I called the VA and they made a home health recommendation. I was afraid to leave him alone, no I would NOT leave him alone. I bought a monitor to have so I could hear him if he needed me and I was in a room too far to hear him easily. His safety became paramount. and still is.

Hubby was ambivalent to the idea of someone coming. I just needed a respite so I could run to town and grab milk, toilet paper, and coffee along with other necessities and know he wasn't alone should he fall again. The intake process was slow (dealing with the V.A. imagine) but when we finally got all the red tape ironed out he qualified for a personal care aide. I was so happy to have some relief and willing to let go of some of the responsibilities I carried. Or was I?

After the Nurse left, my emotions became jumbled up.

I was truly grateful to be getting the extra help. Help I had prayed for. I knew how much good it would do physically and emotionally. But at the same time I was stressed about another person caring for my husband in such an intimate way.

This is going to sound so silly and I can just hear your remarks now but my feelings were very real.
The fact that another woman would be in my house, my bathroom, my bedroom to assist my husband with bathing and dressing had me in an emotional spin. I don't know why either. I never ever felt like that when he was in the hospital or had female drs he needed to see. So why? I didn't understand my reaction.
It never even hit me and I never even thought about it until the nurse left. I was so ready for the help that I needed and need. I felt foolish about it.

I cried and prayed that I was doing the right thing.

I realized after much thought that I needed to move mentally from a 'wife' to a 'caregiver' frame of mind. I suppose I worried that in such an intimate setting I would lose the affections of my husband to this other person as she cared for his personal needs. I have lost so much of him to Lewy already I wanted to hang on to what was left.

So I made the emotional transition from physically intimate wife to wifely caregiver and this makes it easier for my heart to endure the things I must concede for his well being and mine. It feels like I have grieved for so many years already.

Please do not think for moment of time that I do not love Hubby. I most definitely do. He is the other half of my heart. It just hurts my heart when he doesn't remember who I am. Lewy Body has forced our relationship to change.

And That Wash Woman, she has been with us more than a year now. We all hit it off quite well and I am more than happy with her. She conducts herself in a very professional manner. Both Hubby and I are comfortable with her and he seems to be more cooperative for her because he knows she will only be here at certain times where I am here all the time he can just put things off until later.

She has certainly been a blessing to our lives :-)

Hello? Is anybody here?

From LBDA:  Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

One of the core features of Lewy Body dementia is hallucinations.
When Hubby started having hallucinations I really didn't recognize it as that as it started at a time when we actually had several people around. After those people all left and the only ones left here at home were Hubby and me, he still asked about the "people" in the house. There were times he would wake me in the night and ask me if there were people in the house. Always 'looking' and making sure the doors were locked. But somewhere and somehow in his mind the ability to know that they couldn't be real, could they?

To Hubby, what he saw or sensed seemed very real. Non threatening but still an annoyance to have here. He wanted his privacy. Those people have occupied the bathroom when he has needed to go resulting in an unhappy and embarrassing situation. They have built churches in our bedroom and airplanes in the back yard. They have even put new doors in the ceiling. The conversations of the people have been so loud they have woken him from his sleep and that really annoyed Hubby, who in turn woke me to complain. I complained myself.

Some times he thinks there are children here and only once we have had a dog in our bedroom (Our dogs are outside dogs). Since we have animals anyway I can't really decide if the animals are real or imagined.

So how do we deal with hallucinations? Medications? Argue? Reasoning?

Neuroleptics, also known as antipsychotics, are medications that are used to treat hallucinations. A person with Lewy Body can not tolerate those meds resulting in a rapid decline or worsening mental condition that they may not bounce back from. Lewy is famous for it's ability to go from complete confusion to logical reasoning and back again in a matter of moments, hrs, days, weeks) Why make a bad situation worse? I always consider Lewy Body and  neuroleptics like mixing bleach and ammonia. TOXIC!

Arguing  only results in Hubby getting more confused, upset and anxious. In turn that seems to make his shaking and his cognition worse. No sense in rocking the boat in already choppy waters. (Hubby was in the Navy, I wish I had a great Navy saying)

Reasoning, maybe. Somewhere in Hubby's mind he is aware that he has a problem He does not like to talk about it but he is aware. There are times he will ask about the people only to say, "No, that can't be right". I have seen him looking around corners or into rooms. When asked what he's looking for he just stares at me and says, "Nothing". So I believe he knows. But there are the times when he is very sure that the doors need to be checked that they are locked so nobody can get in. (I agree) He has complained that there were too many people in our bed for him to find a place to lie down. I just assure him that there is plenty of room because I only want him in the bed. I also inform him that there better not be anyone else in the house as at times I am in my pajamas. He is almost always satisfied with my responses.

He doesn't seem distraught by the people. They are just there or not. I on the other hand wish the lazy bums would do something to help out around the house. ;-)

A week of smiles and weak smiles 1/10-1/17

 I attempt to keep a daily journal of the things that make me smile about and or with my husband. My goal in doing so is to keep me focused on the good and prevent me from getting so bogged down in the sadness and frustrations of this wretched disease. Believe me when I say there are more negatives that happen throughout the day that it would be easy to concentrate on them. But, I am choosing to concentrate on the positives. I do not always succeed in my attempt and I try not to use the same generic thing more than once unless I can be specific about something he has done.

I never make new year resolutions but this year I did, and it is as follows pertaining specifically to my husband:

Philippians 4:8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Jan 10: I got nothing. Hubby slept ALL day. I woke him to eat supper and back to sleep he went. ( I had already used calm and peaceful )

I don't have to give thought to today's smile. Jan 11: Hubby asked me to do something for him and as I passed by him he reached up and "spatted" me then grinned real big. He has such a beautiful flirty smile :-)

Jan 12: Took Hubby to the Eye Dr and didn't get to leave until VERY late. We stopped and had supper. I appreciate the quiet relaxed time we got to spend together :)

Jan 13: Got a "me" day today and enjoyed every moment of it. Hubby was still in bed when I got home. I walked into our room to let him know I had returned and he said, "Hey Babe". Acknowledgement that has been 'lost' and momentarily returned to hug my heart :)

Lewy Body is no laughing matter but some of the things it does sure make me laugh. Jan 14: Hubby was looking outside today. The back deck doesn't get much sun so the uncommon ice and snow we got has been slow to melt. Hubby walks in to ask me, "When did we get all that ice?" I tell him about the extremely cold snowy weather we just had and he says, "hmm" ...as if he slept through it. Every day is a surprise :)

Jan 15: Enjoyed a lunch out on a gorgeous day with Hubby and his sister. Later when I said I had a good time at lunch Hubby said "Yes, that was nice" :)

Jan 16: There are times Hubby has his time of day confused and asks me to make his breakfast more than one during the day. Today I woke and made myself some oatmeal. When he woke he asked me to make him some breakfast and I said 'Again?" As soon as I said it I realized I was the one who ate, not him. We laughed about that and he just shook his head at me!! ROFLOL!! Maybe I have the problem ;-)

Jan 17: Quietly minding my own business and wrapped up in some silly computer game while waiting for supper, I heard hubby walk (shuffle)  into the room and he stood there quietly then unexpectedly YELLED "IS IT READY?!" and cackled like a loon after I nearly jumped out of my skin. What a goof ball! LOL! :)

 

I will gladly pay you Tuesday for a hamburger today

Hamburgers!! That's all Lewy wants to eat around here, oh and Malt O Meal.

Because of the shaking disorder associated with Lewy Body eating has become a chore and frustration for Hubby.
Finding finger foods he likes has been a little challenging for me but I'm very sure less of a challenge than him trying to eat from utensils. So he has settled on Malt o meal and hamburgers.

Why? That's a good question but all I can do is guess.

You see, Hubby has had several embarrassing moments with food. Falling down and dropping an entire plate of food at a family function once. He was pretty annoyed with himself and the fuss the family made over him.
Truth be told he gets pretty mad when anyone tries to help immediately.
He dropped an entire plate of food in a restaurant buffet line once. He was so mad at himself but I tried to assure him all was well and we would get another plate. We didn't stay very long after that.  Our eating out has dwindled to almost none unless we have a dr appt or he is having a SUPER DAY!

These days whenever we get that rare opportunity to eat out we ALWAYS go someplace we can be waited on and food brought to us. Including any salads or drinks

Because Lewy Body has many of the characteristics of Parkinsons he shakes. When he gets upset he seems to shake more but that might be anxiety. Eating from utensils is difficult so I try to avoid foods that will easily fall from a fork. But even foods spooned and pierced are shaken from the utensils. Cutting foods is especially difficult so I try and cut things before he ever gets his plate and should we be someplace public I discreetly try to cut for him as to preserve what independence and dignity he feels he has left. Many a time Hubby has refused to finish eating and left food on his plate just from sheer frustration.

Finding the line between helping and babying has been a challenge for me. He wants to be so independent and to a point I just let him. If it's walking a long distance without assistance (scares me so I follow with the wheelchair or walker I bring "Just in case you get tired" and he always does), closing a car door (several attempts), buckling a seatbelt, carrying a beverage (even if it spills) things of that nature.  All those seem like they would be easy tasks but to Lewy they are huge chores.  Once I notice frustration setting in I assist, suggest or find other ways to distract while I take care of the need. Stealing a kiss is a good distraction while I reach across and buckle a seatbelt and securely close the car door ;-)

So back to the hamburgers. With a hamburger, Hubby can hold it in his hands. He doesn't want anything on it but mustard and he mashes the bun flat on it. This prevents the bun from sliding off and he has control over the food getting to his mouth. With the Malt O Meal I can make it thin enough to drink from a straw. I purchased Hubby an over the bed table about a year ago. Hubby only eats in his room so this was the perfect purchase. Since the table is adjustable Hubby can raise it to the level he need to "drink" his Malt o Meal or eat his food. That position is usually right up to his face.

Over bed table 

There are other styles available but this particular one suited our needs.



I also purchased a travel mug . Short and squaty with a lid. The hole in the lid is just narrow enough to prevent the staw from easily falling out yet wide enough to be able to draw fluid through the straw adequately.

These items and actions are just a few of the things that help make Hubby feel independent still. As long as he can manage I say let him.