This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Sunday, April 29, 2012


Decision #1)
Hubby has an appointment with the V.A. in a couple of days and at that point we will decide on palliative care/ hospice.
I knew that this would one day be a decision we would need to make and it's been weighing pretty heavy on my mind since we asked for the consult. My mind knows all the positives of it, my heart keeps saying, are you sure this is the time? It is.
I have questions I want to ask.
I want to know if their service will disrupt our (my) support team in a good or a bad way.
I want to know if I can still continue to use the support system that I feel like I had to fight to put in place.
Direct contact with his Neuro, Mental Health and Primary care are a call away if I have concerns.
I know that we have reached the end of the line as far as meds and treatments are concerned so I'm not looking for a straw to grasp. I'm looking to keep the people I feel are helping me and Hubby, even in a limited way, through this journey.
I want to know if we will receive at least the same amount of aide time we are getting now.
If not, As frustrating as it can be, I'm wanting to keep our aide time even if it means renewing every 6 months and waiting weeks without an aide to get the renewal. 
Perhaps I'm afraid to make this step and I'm not realizing that is what the weight of my feelings are.
It's odd how something that I know is good can feel so bad.

Decision #2)
When Hubby learned about this appointment he was sure I was taking him back to respite.
The scene that followed when I told him went from 0 to 60 in angry milliseconds.
His verbally ugly and angry outburst caught me off guard.
I had to reassure him several times that I was not getting rid of him. Although he said he believes me, he still makes comments to the contrary at times.
SO, now I'm second guessing my decision to use respite care as long as he is at this level of awareness and this sensitive to the thought of going.
One day at a time. I live life much easier this way.

Decision  #3)
The night before last, Hubby took a hard fall in the bathroom. He had fallen and smacked the side of his head against the wall. I didn't see or feel any bumps and as hard as the fall sounded and the position he was in when I was finally able to get to him, I could tell he had hit it pretty hard.
It knocked him for a loop and it took a little while to get him off the floor but it took even longer to get him focused on me and answer my questions.
The main was, Do you need to go to the Dr?
No! Emphatically.
Hubby said he had a hard head.
I agreed and said his skull was hard too ;-)
The best I could do for him was get him comfortable and watch for signs of concussion.
I decided to respect his wishes not to call an ambulance.
I watched him closely and our night was very bad.
It was difficult to separate the fall issues with Lewy Body issues.
Lots of confusion, Lots of mobility issues, restless sleeping.
At one point he concerned me enough that I got afraid.
He was shaking uncontrollably.
Not a seizure, not like the last time, different.
I had finally drifted off to sleep close to 1:30 AM when I heard the hand bar chain.
I got up and went to Hubby's bed. He said he was cold and was shaking.
I checked for fever, none.
I covered him with a blanket besides the 2 he already had but he was still cold.
He continued to tell me he was cold so I draped by body on top of him and his blankets and held him tightly until his shaking subsided.
I didn't know what else to do.
When he settled I went back to bed.
About an hr later I heard the same noise and he was complaining about the same thing.
Again I draped him and held him tightly.
I got afraid, I prayed, a difficult prayer.
I asked that Hubby be given some peace, I prayed that my fear would go away.
And I prayed that if this was the time God intended to take Hubby, that I would be willing to surrender him.
Now that all sounds like it came out easily but I assure you, it did not come without hesitation, chastisement for myself for thinking that way and many tears.
Hubby settled down long enough that I felt comfortable to leave him and go back to bed.
I cat napped the remainder of the night waking to every sound.

Decision #4)
A week or so ago, the owner of the gym I attend had planned a gathering and I was invited.
I asked our son, Sonny Boy, to stay with his father so I could attend.
Sonny Boy agreed as it worked well with his work schedule and I was looking forward to a little time away.
The day (yesterday) finally arrived but it happened to be the day after Hubby's fall.
Hubby was out of it still.
He didn't remember falling and couldn't understand why his head hurt.
On many occasions he asked me why his head hurt.
He conversed little and slept all day. I even had to wake him to go to the bathroom.
Walking was gone, so wheelchair rides and physical assistance was necessary.
As the day moved on I wondered if I should go ahead with my plans.
All the what if's crowded my mind.
Hubby showed no improvement, but also no decline and I had to trust that Sonny Boy would be okay to stay, after all, he was capable and if he needed me all he had to do was call.
I decided to go.

Decision #5)
I am SO happy I did go!
What a relaxing couple of hours without thoughts of caregiving and errands that needed to be run.
I wasn't on a time schedule, other than my own.
I wonder how long it had been since I was able to do that.
I think 5 yrs!
I arrived and was happy to see many of the ladies I knew and met some new people.
I did realize I need to work on my social skills!
A display of food items and beverages was available and we all indulged in the spread.
It was a lovely evening, carefree and relaxing.
When I returned home, Hubby was still sleeping, I woke him to say hello.
Sonny Boy said he never moved while he was there.

Today Hubby is awake and alert. He slept all night.
His mobility, even as limited as it is, was back.

Yes, I believe I made the right decision in going.

Saturday, April 21, 2012

Ours, Mine and His

Once upon a time, a long time ago...
In our world we lived on the schedule of the children and husband. 
Hubby lived on the schedule of his business and the business I told him he had with our children. (He had to be reminded)
In our world there was freedom to just go if something was needed from the store or we wanted to visit a friend or family.  The children were loaded in the car and away we went.
Every day at 3 :PM Hubby would gathered at a favorite place with friends for coffee.
Every Sunday and Wed we attended church.
Every Sunday afternoon was nap time, every Sunday night was "Fend for Yourself" or as others call it, leftover night.
There were school functions and social functions.
In our world, adapting to each other and teaching the children to live in and adapt to it, was just part of raising children, being married and being a family.
In our world there was freedom.

Then our world was divided in two by dementia.

It became My world and Hubby's world.

Our worlds mirror each other at times.
The same, but opposite.
Most days our worlds look nothing alike.
It is then I have to decide which world I will live in at the moment.

Our freedoms have slowly faded away.

Routine and schedule do not work well in Hubby's world.
Things need to progress at whatever pace he needs when he wants and needs it.
Routine and schedule have to be in my world.
The schedule of Hubby's Home health Aide (HHA) allows me to run errands and take a few mins to care for me in my workouts.

When appointments for Hubby are made, pulling him into my world takes some effort.
Preparation and time allowed needs to be made.
It isn't always easy to get him into my world.
I'm usually as exhausted as he is by the end of the day and we both fall back into our own worlds.

At the beginning of dementia, I tried so hard to get Hubby to live in my world.
I tugged and pulled at him but the gravity of Lewy Body was too strong.
We've had some wild rides because of it too. Many of those rides resulted in hurt feelings, anger, and tears, from both of us.
Logic and reasoning , for the most part, are gone in Hubby's world.
It's not like he forgot or misplaced something, it's just gone, stolen, dead, never to return.

Logic and reasoning are still alive in my world although there are times when I forget or choose, not to use them.
Dealing with Lewy takes a delicate balance to get between the worlds. Some days I do tire of the walk but I continue it.
Caregiving is not easy every day, but it's not hard every day either.
We laugh and some days are quite pleasant.
Even in very difficult times there can be a silver lining.
Hubby and I took a trip to lunch the other day.
Once we finished and I payed us out, Hubby said he wasn't feeling well.
Restaurant owner took charge of Hubby's wheelchair as I got the door and the two of us watched as Hubby had a mental and mobile meltdown. Hubby slumped in his chair and became semi unresponsive.
We approached the car and realized Hubby had to be physically lifted from his chair to the car seat.
This was actually a first in this situation for us.
Most meltdowns happen at home.
In order to move Hubby, I needed Hubby to help me help him by wrapping his arms around me.
First I had to get him to acknowledge that I was talking to him.
I had him look at me while I explained I needed him to hold on to me.
I had to repeat this a few times to get a response and move Hubby's arms onto me.
It was then Hubby said, "I'd rather hold on to you than anyone else."
I smiled at Hubby, held his face and kissed him, then lifted him into the car seat.
Restaurant owner helped tuck Hubby in and close the door while I loaded the chair.
He was very kind and compassionate and I thanked him as I got inside the car and buckled Hubby up.
When we got home I got him inside and in bed and I sat on the floor by his bed with my head on his chest.
He put his arm on me.

30 years ago when Hubby and I decided we wanted a life together, I wanted to be a better person for him and for me. I still strive for that daily, for him, because of him and lots of times, in spite of him. I fall short so many times but my faith in Jesus and my relationship with Him keep me moving on to the next day, to continue to love, and forgive not just Hubby, but myself and others and most of all Lewy as odd as that sounds. I have learned so much because of Lewy and instead of staying angry and bitter towards something I can not control and have done everything I can in my own power to change or fix I have learned to accept it, as much as I dislike it, for Hubby's sake as well as mine. 

I have learned that I can't force Hubby to live in and adjust to my world without backlash, so I have to visit his world in order to be a better caregiver for him I MUST bridge the two and step into his more.
Am I missing out on anything, maybe. Maybe I'm not experiencing "life to it's fullest" in the eyes of others.
But this is Hubby's fullest now and not only am I experiencing it, I'm getting to contribute to it.

Statistically I will outlive Hubby.
My life hasn't ended in my caregiving role.
I will move forward when Hubby passes on. I have no idea where or exactly how. But that's not today's decision.
I will not say what I chose to do was in vain.
I will not have regrets that I "missed out on life"
I will not feel like I sacrificed everything even though I have given up, willingly and sometimes reluctantly, a lot of things to stay here.  
I will rejoice that I didn't miss out on Hubby's life and appreciate and treasure the time we do have. As limited in freedom as it is. I still have the freedom to love Hubby anytime I want to, and I do.

Friday, April 6, 2012


Hubby requested we go out to eat so he could get out of the house.
Then in his next breath he said, "At least you let me do that."

Poor Hubby, he wants so much to do things but 99% of what he wants to do he isn't able, ie: driving, going places by himself etc
I've suggested over and over that he participate in different activities but his stubborn side refuses to hang out with "old people".
Seriously?! The man himself is 75 yrs old! LOL!!

At this request to go, I set aside everything I am doing, jump in the shower and get ready.
Then I help Hubby who had decided he wanted to lay back down while I get ready. Not a good thing because the end result is a sleeping Hubby by the time I get finished and we go nowhere. This time he was still awake watching a western.
We get him dressed and shaved, his hair combed and all the extras that go with preparing to leave.
We talk about where he wants to go. He doesn't care.
We talk about what he would like to eat. He doesn't care.
I suggest fish, steak, hamburgers.. He doesn't care.
So I cut my eyes at him and suggest MY favorite with a sly smile, Chinese.  He cares!

We find ourselves once again at a favorite and accommodating place.
We eat a quiet and slow supper, just like all our others.
They seem to get slower and quieter for us.
I tip well for fear they might charge us rent on the table.

Hubby has lots of trouble eating and I assist where I can and am allowed.

Just before we finish a couple we knew walk in.
We haven't seen these people in 5 yrs.
I smile and wave and as they pass our table Hubby looks at the gentleman, perks up and says "Well, Hello Joe!"
I was thrilled that Hubby remembered who these people were and even more thrilled that they took a couple mins to say hello to Hubby. Much of the time Hubby is overlooked when others are around.

Hubby stays all perked up as we leave and he gets all chatty about nothing in particular on the ride home.
Hubby realizes he is chatty and we both laugh about it, but I like it.
When we finally get home I jump out of the car, open the house doors, let our new dog, Booger, out and get the wheelchair from the trunk for Hubby. He and I decide to "walk" the dog.
We enjoy the evening in the yard for a few mins when Hubby asks me, "When are we going home?"
I answer "We are home."
Hubby reponds, "This isn't my house."
One victory at a time I suppose LOL!

Hubby continues his downturn through the night.
He informs me that he has been thinking.
I swallow hard.
Then I ask about what.

Hubby doesn't know where he is.
I ask him if he knows who I am and he says yes, my name is Kathy.
I ask if he knows what my relationship to him is.
He does not know this answer.
I inform him ( I was nice about it!)
I asked him if he felt safe with me.
He said yes.
I tell him we are at our own home.
I asked him if he felt safe at this house.
Hubby looks out the window and says yes.

He tells me he thinks he recognizes my car.
He also tells me that he bought the car for me.
I agree (even though it was I that bought the car)
He continues that he bought the car for me and for "the other one"
I ask who the other one is.
"She is supposed to be Kathy."
Hubby looks confused as he sits down.
He then says "but she can't be Kathy"
I ask why.
Hubby answers, "because she isn't.. She's a ghost."

I refrain from a smile and tell Hubby that there is an actual medical term for him thinking there were 2 of me, Delusion.
He seems satisfied with my answer.
I'm satisfied that he says he feels safe.
And he isn't afraid of ghosts.

Friday, March 23, 2012

Give A Guy a Break

Poor Hubby can't catch an emotional break lately.

In as many days he has received sad news about 2  friends passing away.

Processing the first one has been very difficult for Hubby.
He is lost in the house and unsure of where he was most of the time.
He asks me what day it is more than once and became obsessed that we should attend the funeral.

Hubby had a nurse procedure scheduled to have his ears cleaned out.
His hearing difficulties have increased so I made an appointment to have them looked at.
As it turned out Hubby had no wax build up that was preventing his hearing loss.
We were both disappointed by this information.
Hubby believes he is going deaf and I am sticking to my original thoughts which are the Lewy bodies are the reason that Hubby has hearing problems, less hearing and more word comprehension.
There are times Hubby can hear perfectly fine and others that words need to be repeated, more than once, or twice, or explained.
Then there are the times that Hubby believes I said one thing and repeats what he thinks he hears, utter nonsense, that much of the time leaves me in laughter after I move past the frustration.

On the way home I asked Hubby if he wanted to stop and have lunch.
He said "No" so I headed for home.
When we were just a very few miles from home Hubby asked me if we were going to stop for lunch.
SO I made a turn and headed back to our favorite family restaurant.
While we were there we ran into some friends who informed us about the passing of another.

UGH! Poor Hubby

Since then Hubby has taken an even farther downslide in cognition.
We are back to him asking me if I live here and if this is my house.
Where we are and when are we leaving.
Did the VA hire me to take care of him etc etc.
One day he asked me what day it was so many times that I wrote it down on a piece of paper and held it up at him when he asked again. :)

There are just too many brain connections misfiring to allow Hubby any processing the deaths of his friends.
This has left him in a whole other world I'm not part of. At least he isn't fearful or anxious.

Hubby still insisted that we do something for the funeral.
I ordered flowers and sent condolence notes.

We've attended many funerals of family and friends, over the course of our marriage.
We understand and accept that dying is a part of the life cycle and sometimes the cycle ends too soon and or unexpectedly. Normally we would have attended the service.
In my heart though, I knew that Hubby's attendance would be too difficult for him.
If just the news caused this much confusion I could only imagine how Hubby would react the raw emotions of the deceased loved ones.
How long would Hubby be in the decline and would there even be a bounce back like there can be in Lewy Body patients?
The risk of attendance seemed high to me and I wanted more than anything to avoid the  sadness and the service only for Hubby's sake.
We even talked about how difficult I thought it would be and the downturn Hubby already had, although he didn't realize it too much.
I knew I needed to make an executive decision.
One that would leave me a dictator and more than likely enemy number one.
I was pretty keyed up about it.

The night before I stayed up with Hubby extra late.
He asked me what we needed to do in the morning.
I just responded that we didn't need to do anything and I changed the subject and Hubby followed.
The evening ended and I prayed really hard to just let us sleep late.
Prayer answered but I still woke early enough.
I prayed more that Hubby would sleep for a while and possibly through the morning service.
This would allow me to stay in his good graces by not making such a hard decision and insisting we would not go.
Hubby did sleep through the service and through lunch.
Youngest daughter called to say she and youngest grandson were coming for a visit. YAY!
I told her about her Daddy and how I prayed he would sleep and at that moment he still was.

She mentioned that perhaps I prayed so hard I prayed him into a coma.
I busted out laughing!
Tension release right when I needed it but I have NO idea where she gets her sense of humor ;-)

Hubby slept through most of her visit and he woke just before she left for home.
He asked me if we missed the funeral, I said yes.
Hubby was upset with himself for sleeping so late.
I just said that it was okay since Hubby wasn't feeling very well anyway.
He agreed.

Tonight he is still as confused as ever.
I don't know how long this will last or if it will end.
Dementia, it is what it is and we'll just do the best we can as the days come

Monday, March 19, 2012

Let My Guard Down

A few years ago I was channel surfing and ran across a sermon that caught my attention.
It wasn't so much the topic that caught  my attention as it was the man's presentation.
The topic was on The Whole Armor of God.
I've heard and read and taught it myself so I was familiar with the text.
Ephesians 6: 14-18 (snipits) tells us to
Put on the full armor of God so we can take our stand against the devils schemes.
Stand firm wearing the belt of truth buckled around your waist, with the breastplate of righteousness in place, and your feet fitted with the readiness that comes from the gospel of peace.
In addition take up the shield of faith to extinguish all the flaming arrows of the evil one.
We should wear the helmet of salvation and the sword of the Spirit.
And pray, all kinds of prayers and requests.
And be alert.

SO? what does this have to do with caregiving for dementia?
Well let me tell you in a min.

The preacher came out on stage wearing armor. Not actual armor but some sort of a noticeable costume.
OK so yes any preacher wearing any kind of armor would be noticeable.
It was humorous to see this and I couldn't turn the channel until I heard what he had to say LOL
I silently acknowledged his teachings as what I understood as truth from my own study and teachings.
He showed off his pieces of armor and discussed them one at a time.
Then he took a sure footed stance and said , Be alert, because if you arent..

Then he turned around

I laughed so hard when I saw what looked like arrows in his behind!
There was no protection there!

Now the caregiving comparison.

In caregiving especially for dementia I try to prepare for the battle against, what I consider, the "evils".
I buckled myself with the truth that the Hubby is not the disease and the disease is not the Hubby.
I provide everything I can to do right by Hubby when providing the best care, be it in my own physical care, with aids or respite service in a facility.
My feet are ready for transport to appointments and outings or they are ready for just walking into the room  with my presence.
I have faith that God won't give me more than He can handle when I turn it over to Him.
I wear a helmet of knowledge and continuing education to better care for Hubby.
I carry a sword to fight the systems and cut through red tape.
I pray what feels like non stop. I pray for peace and understanding (I never pray for patience because i don't want trouble) I pray for rest and good days and a plethora of other things.
And I watch and stand guard against illness and side effects and too much noise and excitement.
Always watching, always on guard

I thought anyway

I let my guard down.
And I got shot with an arrow, right in the behind
and it hurt

I had to break sad news to Hubby about a very close and very well loved family friend.
Hubby took the news of Friends passing very hard.
We knew Friend was seriously ill and had made a few attempts to get ready and go see him while in the hospital, but Hubby couldn't ever follow through this last week. It was a stressful week for Hubby. We even had to cancel a dr appt because we just couldn't get out.
There is some news I don't relay to Hubby until it's a have to. It's my, I'll cross that bridge when I get to it, attitude. And some news I never have to tell Hubby, or haven't had to yet. I try not to bring worry into Lewy's world.
But the news was very evident apparently on my face because Hubby sensed something was wrong.
Hubby had a pretty rapid decline in cognition after that.
I actually expected it and tried to prepare myself.
I handled it pretty well through the day, and the afternoon.
Then the evening came. The time of day when cognition melts away into the sunset and confusion settles in like the dark.
I suppose in my own sadness and effort to remain settled for Hubby I didn't think the day could get any worse for confusion.
My mistake.
Hubby had mobile meltdown when he was leaving the bathroom.
As usual he called for help.
This time he substituted me for someone else.
I would so much prefer to be forgotten than substituted.
I will honestly say that it hurt so bad I burst into silent tears.
I walked over to Hubby, calmly said , My name is Kathy; as I took his arm.
To which he replied, Oh I know that. I don't know why I said it, really I don't.
I assured him I knew he didn't mean to say it and helped him to his bed.
I washed my face and offered Hubby a beverage.

I had to find a way to get my guard back up against Lewy and not against Hubby.
As we lay in the semi dark I heard Hubby get up and saw and felt him as he walked the length of my bed.
He came to get a good night kiss.
Then he went back to bed.

Hubby is not the disease, the disease is not Hubby.
Even though I repeat that over and over, my guard still goes down sometimes and I take a direct hit, right in the behind.
Who knew that was where my heart was ;-)

Saturday, March 17, 2012

What a day

Hubby has had a very interesting day today.

But it all started back a few days or maybe I should say nights.
I have been keeping a close eye on Hubby since he started his new seizure episodes. Not overly worried or concerned about them just yet. I've been monitoring his BP and it has all been in a normal range laying, sitting and standing. His pulse rate has been elevated though. His last episode was Friday while he was with his aide.
For some reason I am always comforted by the fact that someone besides me, sees what is happening with Hubby.
When I should be thinking, "Oh poor Hubby and poor you, I'm sorry you had to witness that"
Instead I'm thinking "YAY, something happened while you were here. I am NOT imagining things"
Weird I know.
The night was followed by lots of extra confusion.

Hubby's normal, but less so lately, nighttime behaviors have consisted of night time snacking and trips to the bathroom. His normal movements have become "white noise" to my sleep patterns and anything out of the ordinary sets off some type of alarm in my head and body and I immediately jump to the ready. I'm never off duty I suppose.
Lately however, Hubby has been staying up at night and wandering stumbling through the house. The parkinsons symptoms associated with Lewy Body make Hubby shake terribly. Results being that anything he touches is shaken and rattled since there is no way to control this movement.

That leads up to the last 3 nights. Hubby has not only been NOT sleeping at night again. He makes every attempt to get into the kitchen at night clutching everything in his path until he finally gets there. My offers to fetch for him are met with resistance as he feels he is quite capable.
I just wish he felt capable during the day and not during the middle of the night.
You see, as Hubby passes my bed he holds it, you know where I'm going with this so just let me start from his bed.

He has a metal over the bed bar on a chain that he uses to help himself rise. (can you hear it clanging?)
Next to that is a bed table, with misc items on it, that I move out of arms reach to keep it from getting beat up at night and knocked over.
Then he moves from the table to my bed side.
I wake and move, mistake, he thinks I'm talking material, I'm not, other than, "Are you ok?"
Hubby pauses to say something I don't understand and probably if I were forced to tell the truth would say at that hour, I could care less about besides, "Yes I'm fine" but I'm not forced to tell the truth so I wont mention it.
Hubby moves from my bedside to our dresser. Seriously I NEED to get that thing cleaned off!
Hubby walks along the edge of the dresser and makes it to the door frame, where he stands and mumbles something. I roll over.
About 3 feet from the door frame is an old family dry sink with glass jars displayed on it. (Who's ides was that?)
4 feet from the drysink is a counter chair. Our floors in the kitchen are tiled.
As Hubby makes his way around the counter a couple of feet he finds the fridge. Another item with glass pretties on the top.
From the sounds of it, Hubby uses the door as leverage.
Then Hubby must make his way back to his bed.

Once settled he realizes he needs to go to the bathroom.

Metal bar on chain, bedside table, my bed, talking. This time he has to walk the length of the end of my bed to get to a doorframe. Lights, squeaky door, shuffling, dozing off until I hear the squeaky drawer (what is he doing?), then the squeaky door, the aroma of my body spray, Hubby makes a stop to sit in the chair by the door and ask if I'm awake. I am, he might need me. More talking (I think, mostly I grunt uh huh and uh uh), the end of my bed, his bed table, his bar on the chain then silence. For all of 3 hrs IF I'm lucky. Then he repeats the processes!

Now I'm one that needs straight hours of sleep by 5 or more. Preferably 8.

This has been going on for the last 3 nights. I even had Hubby stay up ALL day on Friday hoping he would sleep Fri night but Noooo.
So here we are today, Saturday.
I'm tired.
Hubby was too because he decided to go to sleep this morning. I woke him for coffee and breakfast and took advantage of the beautiful weather to do a couple things outside close to the house. I also had my video monitor tucked in my shirt so I could hear him or see him :)
I came in for water and checked on Hubby and he had chose to go back to sleep and was snoring.
I wanted so much to shake his bed and yell GET UP!, but I didn't :/

When Hubby finally did get up early afternoon, he was in a great mood.
He was chatting up a storm. Laughing and carrying on with 2 of our grandsons.
I fussed at him for drinking his coffee lying down and spilling it all over the bed.
He told the boys he was in trouble and they laughed.
I stripped the sheets and remade the bed.
Hubby was sitting in a chair and announced,
"You know, I had a great time yesterday. I don't know what I did but I had a great time"
Hubby was pleased as punch and who was I to say he didn't even though I had no clue what he might have done. It's a positive and I'll take it.

A couple hours later everything changed.
Hubby realized he was having a problem and commented to me about it.
He didn't remember where he was or how he got here.
I spoke with him about this and he told me that he knew where he was earlier but not now.
I asked him if he was worried or scared. He said no but he knew it wasn't right.

I received some helpful suggestions from some of my Lewy Body FB friends.
I'll look into finding a way to bring some rest not only to Hubby but for myself.
Oh how I appreciate those waking this path of Dementia and their willingness to share ideas and suggestions.
It's so reassuring to know that we are not alone on this journey.

Monday, March 12, 2012

Things that go Bump in the night

Hubby and I had the pleasure of hosting our youngest grandsons first birthday party at our home :)

We had a house full of family, friends, and small children.
Hubby participated as much as he could and sometimes just his presence in the room was more than we expected.

It was a great day :)

Then the evening came.

Hubby's participation in family gatherings or anywhere several people are gathered together take a toll on him.
He has a difficult time processing the noise and chatter around him.
He does the best he can though.
The end of events leave him exhausted and cognition takes a bit of a hit. We usually get a bounce back the next day or so.
All these things I am well aware of and have learned to take them as they come.

I suppose a night of "Partying" was a little more than Hubby could tolerate though. I was summonsed out of bed by an out of the ordinary noise.
I ran to the bathroom to find Hubby standing at the bathroom sink with a death grip on it.
I helped him to a chair a couple feet away and watched him as he became glassy eyed and then shut his eyes, leaned back in the chair and proceeded to convulse like he was having a seizure of some type.
I pulled him forward into my chest and held on to him tightly, speaking reassuring words that he was ok and I was there.
I did this to keep him from stiffening out in the chair, banging his head on the wall, and sliding out into the floor. My hold on him would allow me to ease him gently down should that have become necessary.
I remained fairly calm.
I attribute this to my recent education on seizures from my friend Trish, who is a caregiver for her disabled brother Robert. Robert has epilepsy and experiences seizures. Through their willingness to educate and my willingness to learn, I feel like I was able to better handle the situation with Hubby. Knowledge is power.
You can read about Robert through Trish's blog, "Robert's Sister" here.

Hubby was able to stop the shaking he was doing. He realized I had him in the bosom of my chest so taking advantage of the situation, he plunged face first into it! I knew he was fine after that.
Hubby was extremely exhausted and after making sure he was stable I retrieved the wheel chair to escort him back to bed. I helped him settle in and tucked him in, gave him a kiss goodnight and we slept the remainder of the night.

The following night, last night, I was once again summonsed from my bed to find Hubby standing in our bedroom doorway. I asked if he was ok and he replied "No" then proceeded to convulse. I'm not sure if super fast is the proper phrase in describing how quickly I was able to envelope Hubby in my arms and hold him upright. Prepared to ease him to the floor if necessary. The wheelchair was so close and so far away to slide underneath him and if I could have maneuvered  Hubby around I could have grabbed it with my foot and pulled it, but we were stuck in our position until Hubby stopped convulsing.
Still in my tight grip embrace I was able to move Hubby around just enough to lean on the door frame, get my foot on the wheelchair and pull it to us. In the process I tangled my foot up in the wheel, ran over my toe and crashed into my knee.
Then I was able to set Hubby down assess me him and take him to bed, settle and tuck him in, get a good night kiss and sleep the remainder of the night.

I sure hope these incidents do not continue, but something in my heart says that this is just another decline in the course of Hubby's Lewy body Dementia.

Dementia doesn't happen only to the mind, but to the entire body.