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.

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 :)

Wednesday, September 5, 2012

Waiting Game

Hubby had a follow up appointment with the dietician in our efforts to get him a liquid nutritional supplement from the Veterans Association.

As instructed at the first appt I added more sauces and gravies to Hubby's diet. Changed his milk to whole and pushed the high fat high protein and offered a nightly ice cream treat. you can only imagine my emotional  pain as I declined from partaking in the delights!
For the first 2 weeks Hubby ate well. He even had a 2 week weigh in at the time that revealed a 10 pound INCREASE! Seriously! I couldn't believe it. I honestly thought the scale was broken. Dietician recorded the date and weight and said she would see us at the 3 week appointment time.
But the foods began to have a negative impact on Hubby, as in more constipation than he experiences anyway. He began to refuse the food or limited what he would eat by half or more. I continued with sauces and gravies and  the whole milk anyway but as the saying goes, You can lead a horse to water...

Appointment finally came and another weigh in was had. This time a LOSS of 5 pounds was recorded.
During the appointment Dietician didn't take into account the previous weight gain and the now weight loss. She looked at it all as a gain of 5 pounds and asked if I wanted to continue with the request for liquid supplements.
Uh, yes.
Then I told her what I had witnessed and handed her the 3 week food diary while I  mentioned the weight loss within the last week as well as the extreme constipation and the issues that causes. Abdominal pain and more confusion.
Then I handed her my written plea for the supplements.

Request for Liquid Nutritional Supplements

A request for liquid nutritional supplements for Mr (Hubby) has been made by me, Kathy, his wife/caregiver, due to his continual decrease in weight since Dec of 2011.
On July, 2012 he had an average loss of 1 pound per week even though his appetite had remained good, and proper and adequate nutrition was consumed.
Blood test on July 10, 2012 verify that Mr (Hubby's) cholesterol, blood glucose and other levels were within normal limits.
An appointment with the VA dietician was made and kept 2 weeks later on August, 2012. Weight loss of 4 lbs was recorded at that time. A loss of 4 pounds in a 2 week period. Suggestions for increasing his fat and protein were made and handouts for educational purposes were distributed to me.

I informed the dietician that Mr (Hubby) suffered with constipation problems. He takes a stool softener daily and dosage of Polyethylene Glycol every other day or daily as needed.
I also informed the dietician that Mr (Hubby) had limited to no daily activity so an addition of more proteins and fat might prove to be a problem with more constipation but we would take and use the suggestions as part of the process to receive the approval of supplements.

A 3 week diary was maintained for monitoring consumption.

I feel it is in the best interest of (Hubby) to receive the nutritional supplements not only due to the loss of weight which I know can not be restored but as his dementia increases, the amount of food he consumes decreases. Trying to encourage Mr (Hubby) to take solid foods that will increase his constipation suffering will do nothing more than agitate him.
End stages of dementia usually result in the patient being bed bound. Solid food consumption is decreased by the patient and it is my understanding should not be heavily encouraged as the body goes through the shutting down process, yet hydration still needs to be encouraged for the comfort of the patient. Liquid supplements will provide some fulfillment of hunger and aid in hydration.
Maintaining My (Hubby)'s comfort and his calm is the goal.

Respectfully submitted

Dietician said it sounded good and she would have to submit it for approval and that she herself was recommending the supplements.
Yet with all of this the request was denied by the pharmacist. I don't know how the pharmacist has more pull over the dietician but apparently that's how they run things at the V.A.

Got to love the government. At least they are saving some money and boosting the economy since I will now purchase the supplements on my own :)

Saturday, September 1, 2012

Stubborn Independence

Oh my, what a day.

Poor Hubby took a fall and banged the side of his head leaving a mark and I will be forward thinking enough to guess a black and blue face in a day or two.

His attempt to walk from the bed to the bathroom proved futile. He called for me and I immediately went to him but the moment I stepped in the door I saw his grip on the hand rail release and I stepped into the twilight zone of slow motion as I watched him fall over and I attempted to get to him.
So close and so far away and my stomach knotted as I witnessed his stiff unbending body take a tree fall into a piece of furniture and his head scrape down the front of it. He lodged between the end of his bed and the antique sewing machine.
I was horrified as I watched Hubby fall and overwhelmed with frustration at myself for not getting to him in time to, at the very least, deflect his angle and hope he landed on the bed.
I've actually done that in the past by giving him a hip check as he was falling to prevent serious injury.
This time I was too late. Realizing Hubby was in an awkward position I had to drag him out from where he was trapped. Hubby wasn't unconscious but he wasn't responding to me either. He was making some kind of a low moaning noise.
After I got him into the open and sitting up, I could do nothing but cradle him in my arms and cry.
I couldn't even survey the damage I feared he had. I had to pull myself together but I was struggling to do it.
After a few moments I tried talking to him again. He was responsive this time. I sat back and checked him for injury. A mark on his face and ear. A mark on his wrist but he was moving all fingers and wrist. He wasn't complaining anywhere else.
I suggested a ER visit without the ambulance but he refused.
His face wasn't swelling, he seemed alert and oriented (?) Okay alert and oriented for Hubby. So I suggested we get him up and in bed. He agreed yet wouldn't accept my help to get up. He insisted on doing it himself and after several minutes he finally accomplished it. I stood close by ready to assist, wanted or not if the try took a turn for the worse.

I wonder when or if he'll ever realize that he needs more help in the areas of walking.
The fluctuation of Lewy Body make it difficult for him to understand he can't do the things he thinks he should.
I know he wants to maintain his stubborn independence, I get that, but at what cost to him?

Just the other day he was having a really good mobile day and during our outing he wanted to stop at a friends place of business. I always get nervous when he wants to make stops in town but I did and he insisted on walking in so I let him without fussing about it. I sat in the car and videoed him as he made the attempt. This looks farther than it is.

He finally made it inside and through the glass I could see him talking with his friends. After a few minutes they walked outside and the friend stepped in my direction. I got out of the car as friend proceeded to tell me that Hubby was having trouble getting back but didn't want his help,
"He said you would help him, cause you always do."
Friend was right, at least I always do try.