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.

Tuesday, January 26, 2010

House Arrest

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am slowly overcoming that one.

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

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

1 Thessalonians 5:18 (New International Version)

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

1 comment:

  1. Oh, Kathy. You are such a beautiful woman, inside and out! Being a care giver is a tough thing! I only helped with my husband's (back when he was my boyfriend)grandmother who had alzheimer's. She required constand 'round the clock care. It was very hard to deal with. I stayed with her during the day while the inlaws worked. It was tough. She had many different personalities during the day. It's hard to see someone you love go through such changes. My hat goes off to you for taking it all on yourself!

    If you ever want to get together for lunch, give me a shout. :) ♥ Tisha


Thank you for taking the time to word verify comments. I'm sorry that due to Bot Spam the process is a little more time consuming.

Note: Only a member of this blog may post a comment.