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.

Showing posts with label Respite. Show all posts
Showing posts with label Respite. Show all posts

Wednesday, November 6, 2013

Respite Act 3

When I was a young girl I used to love to visit the local park. The playground had a merry go round there. Not the carousel type with the horses but the colorful one that had the rut all the way around it where we ran while holding on to get it to spin, then we would jump on for the ride.
If we were lucky we could get an adult or another person to spin it and all we had to do was hold on for the ride.
Learning how to ride without feeling sick or falling off, took practice.

As a self spinner you could the circle jump on and gently ride out the fun until it stopped.
When another person and their force took over, that could sometimes be another story.
The slow spinners allowed us to sit on the edge and we could bring it to a stop by putting a foot down on the ground, another reason for the rut around it.
The faster spinners left us with little no control so we learned how to ride. For me, it only took one fall off during a spin to learn what centrifugal force was. So to prevent being spun to the outside edge and off, I needed to hold on to the metal bar tightly.
I also learned the many ways that metal bar would be my riding friend. I could sit straddle of it. Arms and legs wrapped around it with a death grip. A little braver, laying down with head toward the center and a foothold on 2 of the bars and hands clutching the bars near my head. Sometimes I could let go.
Learning to stand came with it's own challenges but you learn to crouch and grip, then stand and grip, and eventually you find a center of balance and realize, you can move toward the center where you find the ride isn't so dizzying. There is where you can extend our arms to the sky and feel like you conquered the ride. Just don't let anyone or or anything distract you or you find yourself on your backside getting swung out to the edge. It's also there that you can extend an arm to assist another trying to make their way to the center.

This is my caregiver merry go round.

So it's been over a year since I had a chunk of respite time. Granted, I get an aide for 10 hrs a week. I can get a few errands run during that time and if I have any 'free' time I usually try to get in a workout at the gym I am a member of. Lately that hasn't happened though.

Hubby has been very, very needy. I have been “Honey!”ed so much that I suspect bees will begin to follow me around!
My lack of presence seems to set off some sort of internal distress. Even running the vacuum in another room feels like a luxury. So mainly I sit with him, play a computer game to escape from the reality and mentally shut out everything I don't have to contend with.
Caregiving is weighing on my heart and mind. Everything feels like its sliding to the edge of the merry go round being turned by life and some days I wonder, “Will I be able to hang on without falling off and getting hurt?”
I keep trying to maintain my balance as I work my way to the center. Clinging to Jesus with arms and legs wrapped and locked on. I know once I get there I can find some peace from the struggle as I stand with arms lifted and watching the world spin. It is also there I can reach out to others to help them reach the center and hopefully a center of balance.

One of the things that threw Hubby and myself of center was the start of Hospice. Don't get me wrong, I am VERY grateful for them and so happy to have them. It's just... I don't know.
Hospice started with Hubby a little over a month ago. He continues to deteriorate physically but the odd thing is cognitively he seems 'better' (?). Oriented to place and person. Ahhh but “You aren't fooling me Lewy, I've seen your tricks before and I'm not falling for them!” So even though Hubby seems more his old self trying to communicate (very s l o ... what?), I maintain a distance in my mind and heart so neither will take a hit when the decline slams us again.

Now it's time for respite and I had scheduled 2 weeks.
Hubby's anxiety shot up as respite neared. I waited a while before saying anything to him for that reason and as the days got closer the anxiety increased. His behaviors worsened and his attitude towards me worsened and honestly I prayed SO HARD for the Lord to keep my mouth closed. Eyes straight ahead and just get through one day at a time. For a wile I didn't know if he would even go as he stated he would not. He tried to pick a fight with me the day before we were to leave and spoke very mean, vulgar and hateful things. I promise it took a great deal of emotional strength to remain calm and not respond. I prayed for a steal vault around my heart and a clamp on my mouth. I forgot to ask for protection of my mind because he got a few shots in that made me think, I would be glad when he was gone. Truth.
The morning came and although he was reluctant he was at least cooperative in getting ready. I allowed plenty of time and never rushed him to do anything. I packed almost everything the night before. One mistake I made was doing the packing in our bedroom. I could tell he was getting upset as I started gathering his clothes, so I stopped, waited for him to need to use the bathroom and while he was occupied, moved everything to another room and packed a little at a time until I finished.

This particular respite time I wanted him to try a stay at the VA contracted nursing facility instead of the VA Hosp. My reasons, all logical to me, were, since he had already expressed his dislike of the VA hosp I thought a different place and perhaps atmosphere would satisfy him more. There would be more people, men and women. More visitors in and out. He might be more engaging with them and actually better emotionally. He would be closer, 45 miles instead of 65. The drive is better and I don't have to fight big city traffic. Side note, I was not familiar with the town we were going to so I pulled out my map but Hubby had been there and through there many times in his car dealing business days so he told me how to get there :) Other reasons I chose this facility was he can take his Hospice services with him so if he needs anything at all, supplies, meds, they will provide it. Also the thought that IF I would ever need a permanent place for him, this is the facility I would use so I wanted us both to have some feel for it.

The facility is lovely from the outside. It looks like a remodel was done to it at some point and it was decorated for the fall. The inside was very clean and the front gathering area was large and homey. Residents were watching TV, conversing or playing dominoes with one another or just sitting. One item of interest was a very large display that had actual birds in it. SO pretty.

The room Hubby is in is roomy. He shares with another gentleman. A very nice and quiet man. This is much better to Hubby's liking compared to the noisey one he shared a room with at the VA hospital. The rooms are older though, painted concrete block walls and connecting rooms share a half bath. So 4 residents share a sink and a toilet. Immediately there was an issue with that. The bathroom was tiny and a wheelchair wouldn't even get wedged in the door. There were no grab bars and the toilet wasn't the raised type. So Hubby was offered a bedside toilet.
Another thing about the room is, compared to the VA Hosp which is completely furnished, this respite room is more like a dorm room. Except for a bed, completely EMPTY! They were kind enough to scramble and bring him a night stand. They rustled up a rolling bedside table too. The gentleman he shares with said Hubby was more than welcome to watch TV with him. The rooms don't provide TVs. So day one of my respite was spent getting Hubby settled in and then making a list of items he might need that I hadn't thought about or making sure he was stocked up. Day 2 was spent gathering those items and taking them to Hubby. ahhh Respite, so glad I get a break from caregiving! LOL!!

I'm not worried about Hubby per se, I do hope he engages with the others. Unless his Lewy Body Dementia lets up though, I doubt he will. Lewy put him on the downward slide. Although Hubby has been more vocal at times, his mobility is shot and for the last few days had to be total assist with transfers. He also gets hit with unresponsive or barely responsive. I do not contribute this to medication. It fluctuates too much. Another Lewy Body symptom.

One last thing to share, Hubby is very convinced that he will pass away while he is in respite. I asked him to wait until it was over. He agreed so I'm holding him to that ;-) but the best thing was his mushy sentimentality and expression of love for me.
As we were getting prepared to leave for respite, Hubby said “Well, if I don't see you anymore, it was nice knowing you.”
LOL!!!! I'll take what I can get :D

Thursday, September 27, 2012

Respite...Take 2

Why , Thank You, I think I will take 2.
2 weeks that is.

Last November I brought myself face to face with the need for respite.
Fear of the unknown (read here ) kept me frozen in the decision for respite until I finally just closed my eyes and jumped in (read here ). Boy was I ever glad I did too. It was just a week and I didn't do anything that would qualify as special. I stayed home regrouping and close to the phone for contact if I was needed. It turned out to be a great relaxing week.

So now here it is 10 months later and I took advantage of the respite services that were offered by the VA. Hubby qualifies for up to 2 weeks at a time 2 or 3 times a year or more in emergency if needed. Lets hope we don't need the emergency time :)

I made special plans for this respite.
I called without hesitation and set up the date.
My time chosen coincided with my birthday! Imagine that ;-)
I planned on spending my 50th birthday with far away family and friends. Also reconnecting with my best friend from grade school. We hadn't seen each other in 34 yrs! I also made plans to connect with some on line caregiving friends. People that have become very close to my heart and I've been chomping at the bit to meet.

So I had these plans but was pretty reserved in my excitement for them, and if you know anything about me from reading this blog you know containing excitement isn't easy,  but I did since I wasn't quite sure how Hubby would react to another stay in respite.
I prayed.
A Lot!
I called in the prayer warriors too.
Hey, I'm not shy in asking for help especially when I know I'll get it :)

Hubby accepted the news about respite quite easily. I waited until a few days before hand to tell him. I know that telling him anything far in advance will leave him time to dwell on things and it raises his anxieties. Thus raising mine, so it was comforting that he accepted the information as well as he did. Power of prayer.

I remembered from the last respite they asked that I label his clothing with his name. Since he has a shirt he likes quite well with the name of his ship he served on embroidered on it, a few weeks before I had to pack for Hubby, I had several of his shirts embroidered with his name on them. He loved them. :)
I bought iron on transfers and did the same thing with his undershirts.

The  morning came and I got Brother in Law (BIL) up and off to school.
Hubby got up and I was able to get him ready to leave with no problems.
The ride to the VA hosp was good.

Once we arrived for intake, I took on my Lewy Body Dementia teacher persona.
Nurse and I had a nice visit about it, pharmacist and I did the same.
We went over all the meds Hubby takes and I made sure everyone understood that Hubby only received the meds listed and nothing more. I explained about his hallucinations and that he is not distressed by them and most of the time understands they aren't real so they aren't anything to get concerned about or anything that needs medicated. I must have been a little insistent that they understood that because when I said "He doesn't even get a tylenol unless it goes through me first." I got a "Yes Mam" from the pharmacist. LOL

I made sure they had my numbers and emergency contact numbers.
I had made a list of items packed and worn and gave to the intake nurse.
I also assembled information on Lewy Body Dementia for the staff to read and share.
Education, Education!

Hubby got anxious only once when I was leaving. He didn't know why I was leaving before he was settled in his room. I explained I couldn't stay and the nurse would take care of getting him settled. He was okay with that. He kissed me goodbye.
I walked away and didn't cry this time.
I believed he would be in good hands and I trusted my prayers to be heard and answered with a yes.

I had a day and a half to get myself ready for my own trip.
My excitement for the time was beginning spill out.
I still had BIL to place with his sister but that was a piece of cake since he already has a living setup at each of the 3 homes he lives in.
I also made an executive decision that there would be no "on purpose" exercising. "So Be It" Gavel strike

Now comes the part when I pull out my slides of my trip.
*Dims lights*

Oldest daughter and her Hubby accompanied me as travel companions.

Now I only had plans to do 2 things for certain.
1: Have a gathering on my birthday with family and friends.
2: Finally meet my on line caregiving friends.

Son in law said that was perfect, meet strangers and have a party.
Sounded like college to him LOL!!
Yes, the rest of the trip was just as hilarious.
We laughed the entire time we were gone.

Our first stop brought me to face to face with my newest friend Bette.
Bette cared for her mother, who had dementia, in her home for several years before her mother passed away last July.  My heart ached for Bette, rejoiced with Bette, cried and laughed with her. How could I pass through her state and not find her? Bless her heart for taking the time to come meet and visit with me. It was like seeing an old friend and I hated leaving her when our time was up.

Oldest daughter, Son in law and I continued our travels arriving in NY state, the place I was raised.
We did the typical sight seeing at the Falls and I filled my heart with the joy and love of being with my family and friends. The only bad part about it was that I didn't get to see everyone I wanted to. Fun part was reconnecting with my second grade teacher!

Our next destination took us to the outside of Chicago.

We took the train into the city and rode a trolly through the town. Sight Seeing at it's finest including a trip to the Aquarium and some deep dish Chicago Pizza and

Oldest Daughter, Son in law and I made our way to the Sears Willis Tower for the last stop of our vacation. 1400 ft, 103 floors up and we even stepped off into the glass bottomed ledge.
Confession, I walked in backward looking up and did a lot of nervous laughing.
I had a spectacular view of the beautiful city and to top it all off, I got the sunset. It was a perfect ending to my perfect respite.

We headed home the next morning and I returned refreshed and  rested. Normally in whirlwind travel we can feel tired upon return. Nope, this respite was just what the Dr ordered. I even had a few days before getting Hubby to catch up on laundry, visit the dentist, take our dog Booger to the vet and get BIL resettled into his routine. 

You might be wondering, "Did she even think about Hubby while she was gone?"
Oh yes, I did. Even though I was enjoying my respite time away I still kept Hubby in the forefront of my mind. I called all but 2 days to check on him. He did well and adjusted easily. He had one slide out of his wheelchair without injury and it was reported on one day that he was having some anxiety and was a little irritable. I laughed at that and said he was having a good day then ;-) But overall, his stay was a good one.

The day to get him arrived and as I walked into the wing Hubby was in I saw him sitting in a wheelchair in the hall. He looked good but I could tell there was a decline. He didn't smile at me when I walked in but he did smile at me when I spoke to him. He wasn't ready to leave so we went into his room. We were met by a male nurse and we all hopped in to get Hubby dressed and packed. Hubby needed to use the restroom and had been in there awhile so Nurse stepped in to see if he was ok. I overheard Hubby ask Nurse "Who is that woman?" I laughed out loud! I think that was the first time Hubby has not recognized me. For a long time he hasn't "really" known who I am as his wife, but he has always recognized me as someone he knows or is familiar with even when he gets me confused with the "other" Kathy.
When he came out of the bathroom I had him packed. I handed him his hat and asked him if he was ready to transfer into his own chair and go home. His answer was "Yes, but lets get one thing straight before we do. Who are you?" I explained I was the love of his life and the woman he couldn't live without LOL!!! 

He kept asking me about the "other Kathy".
The nurse assured him that I was the same woman that was there last time he stayed with them. I offered that I had colored my hair to remove my natural highlights so that might be confusing him. He accepted what he was told and came home with me even though I could tell he wasn't quite sure.

We made a few stops on the way home. We had lunch with Youngest Daughter, Other Son in Law and Youngest Grandson. All familiars to Hubby. We stopped to see a friend of Hubby but we didn't stay long as Hubby had physical  meltdown. I finally got him home and settled in his bed.

The next day we had to go back to the VA for a hearing aide appointment. Hubby has complained about hearing for a while and to be honest, even though he does have some hearing loss, I believe it is less his ability to hear and more his inability to process the words. On the way home he complained about the noise and half way home of our 70 mile trip, Hubby had another meltdown physically and mentally. He slumped down in his seat and stopped conversing with me. I got him home and in bed but he was basically worn out for the rest of the day.
Kathy diagnosis : Too much auditory stimulation for his brain to process sent him into automatic shutdown.
He has not worn his hearing aids since.

Hubby's 3rd day home had another Dr appointment scheduled but at the facility closest to us about 20 miles. We finished early enough to take Sonny Boy out for his belated  celebratory birthday lunch. Hubby did well this time but became very needy as the day and night wore on. As soon as he needed one thing I was trying to get  and do for him, he needed or wanted something else. I felt like I was running through myself for him. I stopped and stared at Hubby and laughed. I had just been on an 8 day whirlwind road trip and felt great and Hubby was home 3 days and I was exhausted! 
Life back to normal :)

I learned a few things about myself and life in general on this respite.
The first thing was
NEVER EVER color your hair the day before you travel IF you are using a new brand. You might wind up with an intense color.
Secondly, If you plan on having pictures taken make friends with spanks and do not pack the pants that might fit in the back but cut you off in the middle.
You could end up looking like a sausage with a rope tied tightly in the middle.
And Third, don't brag about your running ability if you can't run faster than the people in Chicago are walking!

Respite, it's all it's cracked up to be :)

Saturday, November 12, 2011

Me, Myself and I and BIL

My daily call to check on Hubby verified what I had said about his stomach problem was correct.
I find it funny that discussions of bathroom issues are as natural as discussing the weather.
Hubby was feeling better had risen to eat breakfast and was resting when I called.

There seems to be a calm that has settled on the house.
For the last 2 days I have noticed it in BIL too.
He's more cheery.
He sings while he puts his shoes on for school.

This day I tackled a home repair project that could NOT be done while Hubby was here.
Re Grouting the bathroom floor.
I've been wanting to take care of this over due repair for some time now but have not been able to free up the bathroom for the length of time it takes to do the job.
Hubby being away frees up the bathroom (we have another upstairs I can get to) and allows me to devote my time to doing the job as quickly and easily as I can without distractions.

You might think that this is all boring and wonder why I would choose an activity like this for my respite.
I can assure you that this is something I want to do.
Not rushing into a free for all respite week for me was the most relaxing and mind strengthening I could do for myself.
Taking care of me had to be priority number one if I want to care for Hubby.
Knowing this job will be finished is part of taking care of me.
I really am feeling a little more collected and although this job is tedious I do enjoy it.
It's what relaxes me.

Also, I still have caregiving responsibilities for my 63 yr old Down Syndrome BIL.
It's funny though that I never consider myself as a caregiver for him. I've been doing it for more than 17 yrs. He has always been considered as one of my kids. Perhaps because he is of the age equivalent of an uneducated 8 yr old and his care blended with the kids while they were young.
He still needs care just like my children when they were young.  They outgrew it, BIL didn't
That type of care was just being a parent and nothing more to me.
BIL's needs are met. He is encouraged to do everything he can and sometimes pressed to do what I know he can even when he complains that he can't.
He is always encouraged to try something first before giving up and he enjoys the independence and challenges, most of the time.
He is a true treasure to have when he comes.
His care is shared equally between his 2 other sisters and myself.
I have him for the fun months, Sept - Dec. I get all the good holidays :)
Oh, he can annoy me, just like my own children used to, when he gets stubborn or moves my things around and then I can't find something. He takes FOREVER to do anything and his morning slow and my lack of morning friendliness can clash when he must be pushed to make it out the door to catch the school bus. Or when he turns into a Drama Queen over things.
BIL makes me smile more than annoys me though and I love him and I love having him.

Testing the respite waters in my own way works for me.
Knowing respite is available eases my mind for a plan B.
I don't feel so trapped, if that's a good word to use.
Knowing Hubby has adjusted fairly well to his stay assures me he is in good hands.
Prayerfully turning it all over to God to deal with makes all the changes of the week easier to process.

Wednesday, November 9, 2011

Day 1

Just a manic Monday for us.
I got Hubby all packed the night before his respite day.
Added the few misc items and zipped his suit case on Mon morning.

We discussed the weather and coat/jacket options.

I brought him his coffee and breakfast as I made sure that BIL was getting ready for school. While they ate I dressed.
I was always the last minute gal for getting ready. We were never late for anything but I was always a right on time person. I didn't allow for delays, just always optimistic there would be none and we would arrive on time.
Hubby was the complete opposite. He was the early bird.
He constantly reminded me of the time.
The time it was, the time we had left and the time we needed to be anyplace.
This always annoyed me.
Now our tables have changed.
I'm the allow for everything gal. I give Hubby a 2 hr window to get ready to go anywhere. BIL needs the same amount of time.
Now I'm the keep everyone moving and be early gal.

An extraordinary feat in the mornings also ;-)

This particular day BIL school bus wasn't making the morning run so he would be a drop off.
Grandson had left his blanket from the day before and daycare would never forgive me if it wasn't returned to him so errand #2 was on the list.
Dog out, loaded the suitcase, the Hubby, the BIL, and tried to remain as calm and collected as possible fearing another refusal to go was looming somewhere in the Lewy atmosphere.

3 miles down the road, remember the weather conversation? Yeah, me too. I had to turn around and get the forgotten jacket for Hubby.
 Pulled in the driveway, jumped out of the car, opened the front door and the dog ran in.
Chased down the dog and booted her out. Back in the car with jacket in hand and away we went for our 70 mile trip to respite , after 2 errands. No turning back now. I had decided anything else forgotten would be purchased on the way.

Once we arrived we were directed to 3 different places the third being the proper one. (Third times a charm)
We were greeted by friendly staff and seated for intake which was more than 2 hrs.
I had the opportunity to educate a couple of the staff about Lewy Body Dementia. I had also printed off laypersons pamphlets and left it with the Nurse asking her to share with the staff.
She had only heard of Lewy Body but was not familiar with it.
I felt confident that she would read it, I want to believe she did.

Hubby was anxious about everything that was signed. He was double assured about every paper.
Once he implied I was just going to leave him there for good.
Bless his heart I know he had to be scared.

At one point he became angry with me because he had more money than the facility wanted him to have on hand. I offered to bring it home and he told the intake Nurse, "She just wants all my money so she can spend it".
The intake Nurse was kind and tried to explain that Hubby really didn't need that much on hand and I was only trying to help. Hubby was angry and threw his money on the table toward me. I gave some back and promised to put the rest up for him to have when he returned home.
I assured him over and over that I would return on Monday.

Lunch came and they seated him in a small dining room.
I helped him with his tray, and while doing so, 2 of the residents decided to get into an argument with each other.
They were yelling and pushing each other then the staff started yelling.
I wanted to look over at them all, point a finger and sternly tell them that we were company and they needed to mind their manners and shut their mouths! But I didn't, I continued to help Hubby.
Another resident sitting close to Hubby told me not to worry "We'll take good care of him"
I smiled and thanked him.
He then told Hubby that it was better than BootCamp. Hubby laughed.

I kissed Hubby, assured him I would be back Monday and reminded him I loved him.
Walking away seemed like the hardest thing ever.
He will be gone for a week.

I cried that night. I did not sleep well.
I keep looking for him and listening for him.

The next morning I called to check on him. They said he had an anxious night but over all he did fine.

That refreshed me a little to hear. The nurse I spoke with said Hubby was still sleeping and I assured her that was Hubby's normal. 

Tuesday night was still difficult but less so.

My first day I was able to enjoy a leisurely lunch with my sister in law.
We did a little window shopping and didn't watch the clock. 
We laughed and it was like old times.
I had fun.

The night ended and there are no angry words or harsh feelings.
The night ended and I missed Hubby instead of wanting to find a place to hide from him.
The night ended and I trust he was in good hands.

Tuesday, November 8, 2011

Scardy Kat

II Timothy 1:7 For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline

Statistically speaking respite care is  vitally important to the health and well being of the caregiver.

Respite care was scheduled for Hubby and I waited until a few days closer to tell him.
He took it well when I presented it as a week of observation and medication review;
Also an opportunity to have his pain in his back and neck cared for.
Hubby was pleased with this idea and was actually looking forward to it.
He thought about a way of escaping me from there.
He told me buses run and he would probably catch one to go into town if he wanted a day out.
I didn't disagree.

Then Hubby thought about it more and he became frightened and anxious.
Our household was filled with anxiety and suspicion.
Angry words and accusations flowed freely from Hubby.

I tried so many times to walk away, walk it off, run it out.
I wasn't always successful in keeping calm, cool and collected.
Some times the angry words spewed from my mouth while my head was screaming to shut up.
Apparently I don't listen very well or learn very quickly.

I NEED a break, my mind heart and body need a break. So I arranged one.
I fought many fears in doing that.
Fear that the new caretakers would not be willing to understand Lewy and medicate him.
Fear of losing more of Hubby to Lewy.
Fear that Lewy would convince others that what he was saying about me was true.
Fear that Hubby would not want to come home.

I coddled a spirit of fear, timidity.
My biggest fear without really being aware of it,
was thinking God couldn't take care of Hubby better than I could.
My faith was lacking.
For me, that was (is) a hard reality.

Sunday night Hubby was very upset.
To the point that he admitted to me that he was afraid.
He even decided he wasn't going to the Hosp.
I felt like respite time was crumbling around me but I remained calm.
I reminded him of all the reasons he wanted to go but agreed that if he chose not to go that would have to be okay and he could just stay here at the house with me.
Later in the evening our son came by.
Hubby beckoned Sonny Boy into the room and had him close the door behind him.
He asked Sonny Boy about going and Sonny Boy, bless his heart, was very kind and encouraging about his fathers stay in the hospital.
Hubby agreed he would go.

To add relief to the house tension, 6 yr old grandson offered his insight to Pappaw.
Sonny Boy and DIL agreed to run an errand for me. I offered them the use of my car and upon their return DIL handed me my keys.
Hubby, observing this exchange, grumpily exclaimed "I don't understand this! She lets you drive her car but she won't let me!" 
To which 6 yr old Grandson sincerely responds, "Well, That's because you're old." 
I had to hide and laugh as did Sonny Boy, and DIL, turned beet red! ROFLOL!!!! 
From the mouths of babes!!!

Tuesday, October 11, 2011

Is this the party to whom I am not speaking?

I think I'm sick.
If I'm not there has to be something wrong with me.
After all, it's JUST a phone call.
A much needed phone call.
So why can't I bring myself to pick up the phone to make the call to the V.A. and inquire about setting up respite?
I'm afraid, but of what?
Respite is VITAL to the well being of a caregiver.
When Hubby was first diagnosed in 2007 the Social Worker had mentioned that the V.A. would provide 2 weeks respite care. At the time trying to process all the information was mind boggling so this info sat on a back burner, so to say.
Here it is 4 yrs later and the thought crosses my mind.
I have read and heard so much about caregiver health statistics like these.
And according to the CDC I'm already in the poor self care bracket.

CDC- Caregivers said they do not go to the doctor because they put their family’s needs first (67% said that is a major reason), or they put the care recipient’s needs over their own (57%). More than half (51%) said they do not have time to take care of themselves and almost half (49%) said they are too tired to do so (NAC, 2004).

YIKES! I never see a Dr or have checkups for anything.
If I don't look after my own health, physical and mental, how effective can I be as a concerned and compassionate caregiver?
It's just a phone call but every time I think about making it my heart races and my palms get sweaty.

I have all the reasons not to in my head. They all make sense, to me.
They won't care for Hubby like I do.

What if he gets very unhappy because he wont be able to do the things he thinks he can and becomes difficult. Will they medicate him?
What if he gets confused and they mistake his night time wandering as sleeplessness and give him sleeping meds.
Will they let him have his pull ups or make him wear tabbed disposables?
What will he be like when he comes home?

And something hiding in the far back of my mind where scary things fear to look. Even worse,
What if he likes them better than me?
What if he is happy and doesn't ever want to come back to me?
What if he takes a shine to a friendly yet professional caregiver or resident.
he's a charming guy, it could happen.
After all why wouldn't he? He doesn't really know me anymore.
What if I lose him,


I don't know if my heart could stand it.

This is a horrible feeling!
I must be sick.
Please let me be sick.
When I get better, I'll make the call.

Friday, October 7, 2011

Still kickin

The passing of  Hubby's friend must have been extremely difficult for him to deal with.
At least that is how it seems to me after the funeral services.

What a terribly difficult day Hubby had the day after.
Hubby had been wound up tighter than an 8 day clock and has done nothing but try to argue with me ALL DAY!!!

The morning started off with the usual dialog of moving away.
I don't do mornings until I have had a least 1 cup of coffee in silence which I did not get.
It all went downhill as the morning wore on. Enough downhill that I threw my patience away and got huffy with Hubby.
Walk away and shake it off wasn't helping much but I really was trying.

I can hear you thinking, "Why didn't you just go to another room and stay there Kathy?"
Well, when I am out of our room, Hubby comes looking for me.

During this time Brother in Law (BIL) left for church and I forgot to give him his offering and lunch money. I knew he would be covered by other 2 sisters so I didn't really worry he would do without. I was however surprised that BIL didn't remind me of it before he left. It's not like him to forget things like that.
Once he returned, Other BIL came inside and I met him at the door with lunch money repayment. We laughed about my goof and Hubby walked into the kitchen and asked if his sister was out in the car. Other BIL said yes and Hubby summonsed her inside. Other BIL promptly informed her and she came in.

Now sometimes, I consider that I'm a smart woman so I left the room, I was pretty sure what was coming and I was not mistaken.
Hubby wanted to know if his sister would explain to him why he had to be "here".
SIL tried to explain that this was his home and he was getting wonderful care, all the things I have said to Hubby and she was met with the same resistance and anger I have been. She took no time at all to jump right into angry mode and yelled at Hubby then stormed out of the house. It wasn't pretty.
Hubby, angry at his sister, decided I was responsible for turning everyone against him.
UGH I can't win for losing.

But wait! the party didn't end there.

Hubby was grumpy the rest of the afternoon and into the evening.
I ignored, I redirected, I tried soft tones and answers, I tried reasoning ( I KNOW I KNOW but I had to try so stop laughing), I went outside and sat on the porch swing for a long time
I walked away so much I could have worn out my shoes.
Come to think of it I may have because I was barefoot.


I prayed for Hubby to just go to sleep, I prayed for  the night to end, I begged FB friends for prayers, but I did both of those things AFTER I had my own personal melt down on Hubby that resulted in me allowing myself to get caught up in his constant verbal assaults. Honestly though, after a day of it, it can really make your nerves raw.
I won't go into details but my Spiritual Fruit, which are Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control (Galatians 5:22-23) turned into rotting fruit that got my fruit of the looms in a wad and I verbally threw my stinky fruit at Hubby :(
My inner self was having a primal scream that escaped from my mouth.
I am not pleased with myself and terribly ashamed.
I can't take the words back and even though I may be the only one that remembers what happened, it still hurts that I didn't walk away one more time.
It is what it is though.

My prayers were answered later in the night as Hubby finally settled down and I licked all of my self inflicted wounds.
The rest of the night was quiet and  peaceful.

Then the morning came.
Still feeling the effects of beating myself up I made attempts to make nice, but Hubby was still upset.
He even tried to reason with me about why it would be best for him to leave me and move away.

It took a LOT of willpower and a ton of prayers to bite my tongue and keep from responding.
Hubby didn't appreciate that I wouldn't consider his offer to go away, so he dressed, put on his slippers and a hat and grabbed his walker and proceeded to leave me, on foot.
It shouldn't have been comical, but it was.

Doing those things in itself is a change as Hubby has not been able to do many of them, especially use the walker, in a long time.

I never said a word and just let him do what he wanted. I watched as he walked across the room and to the front door. I watched as he walked out the front door and from the windows I watched as he walked to the end of the car.
I was actually impressed he was able to get that far.
It took him a very long time to do it and he rested at the back of the car for a long time. Eventually he started his trek again and just walked around the car to the side deck and sat on the deck swing.
he stayed there a very long time and I ran upstairs to peer down at him and keep an eye on him.
After a while I went to the side door, unlocked and opened it for him.
Calmly I said when he was ready to come inside, this way would be easier for him. I smiled softly.
He eventually came in and we both took a much needed nap.

Outwardly I was gentle but inwardly I am spent.
I feel like I'm walking through a mine field.
My mind never stops so I never feel like I have down time.

I haven't blogged for what feels like an eternity.  I can't get my thoughts organized so not doing so feels a little selfish and I don't want to be self absorbed in Lewy's world.
I'm still enjoying my walking/jogging but I did take a few days off to spend with Youngest Daughter and her Baby.
Youngest Daughter even mentioned I may need to make arrangements for some respite time.
She pointed out that as long as I didn't have to have a serious conversation, outwardly I appeared to have all together but she can tell just from seriously talking with me that I need a break.
She is very correct and I will be calling the Veterans Assoc. to see if I can arrange it.

On a lighter note, Hubby and I spent a glorious day with our children and grandchildren.
We had a nice supper and some laughs. It was wonderful. We ALL enjoyed it even Hubby who willingly participated in being part of the group. :)

A few funnies that happened I shall share from my FB status

Our dog, Lady, is hard of hearing. She is laying at the foot of the bed and Hubby is trying to get her attention by talking to her. He finally says to her, "You aint paying any attention to me." I say, "She can't hear you" 
He says "What?" 
I repeat, he says "What?" Through laughter I say it one more time. 
Huobby says "Oh, she's like me, huh?" LOL!!

I was just telling my father...It was BEAUTIFUL weather here yesterday and I did nothing at all!
Nothing inside, nothing outside and you know what? 
I don't feel bad about either choice :D

Things have been so pretty good the last 2 days I think I need a Towne Crier, 2 O'CLOCK AND ALL IS WELL!!!
Indulged in too much sugar and shortening last night woke up at 4 with indigestion. :( 
Got out of bed at 4:20 
poured coffee at 4:30 
Hubby got up asking for a cup at 4:35 then decided to "start the day" and say "Huh?" to every thing I answered him.
His last statement was "My clothes are about gone out of there (closet)" 
My response, "Yes I need to get them to the cleaners" 
He asks, "You need to get what to the cleaners?" 
I stare at him thinking, seriously?! 
So I say "I need to get your coffee to the cleaners"
He hasn't said a word to me since. 
5:30 AM, It's gonna be an interesting day. :/
(One comment asked me what I was eating. I said other people call it cake with icing LOL)

And finally
It had been a rather peaceful morning and then Hubby decided he was cold so he puts on a housecoat, looks at me and says "I don't know how I'll make out in this cold weather, I don't have the meat on my bones that you do." 
Seriously Hubby?!?! I love you too!! LOL!!! 

See it's not all bad :)