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, 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.


  1. Look for a nice place that makes you feel comfortable.

    A good transition is a day program. My mom thought it was work... She liked it. LBD folks need a lot of people around all the time.

    Ask all your questions to potential facilities and insist on pull ups. They have to do what you say... Hubby can not be drugged without your permission.

    Why worry about stuff that hasn't happened? Thinking about it with strong feelings will help it manifest... Can you think about something else?

  2. Hi Sue,

    Yes I remember how much your mother liked "school".
    In Hubby's case a day program is something he would not go to. He is adamant about it. I have suggested it on several occasions and so has the social worker at the V.A.
    It was everything I had to convince him to go to the Sr Center with me for lunch one day. We were supposed to go again today but he didn't want to go there with all those old people (giggle)
    He did agree to have lunch at our frequent eating establishment. He even saw a friend that sat with us and visited for a while. YAY! A RARE treat for Hubby indeed!

    As far as facilities, I won't have a choice with the Veterans Association. I take what I get and that will more than likely be their facility 70 miles away.
    Getting him to go there would actually be easier because I could tell him that the Drs are admitting him for a few days.
    I already had a round about meds with a head nurse when he was admitted for his spinal tap a couple of years ago. Because he is a fall risk with dementia, they put an alarm on the bed. Every time he got out it scared him so he was afraid to move. When I showed up bright and early the next morning (They wouldn't let me stay with him) he was still in bed and afraid to get out. He needed "attention" and I was told they were in a shift change. I told them he needed a change NOW. He did get it.

    And the worry about something that hasn't happened, well it already happened once with the result of him leaving me. When he came back 18 months later and we decided to reconcile, we had plans for US. That was March 07 and he wasn't feeling well, in Oct of 07 he was officially diagnosed.
    He so blatantly flirted with a waitress one day a few weeks ago that our oldest daughter got mad at him and told him to knock it off.

    I KNOW I NEED to do this, I just have to jump the hurdle with my eyes closed.
    Lewy's scary no matter what we try to do or how well we try to prepare for it.

    Thank you for replying :)
    Please keep me in your prayers. I need prayers of mental strength to do what I know is the best thing.
    Respite is the best thing.
    I just have to get my head and heart to work together.

  3. I want to take time to write a reply to Kathy, but this is for Sue. You wrote that LBD folks need a lot of people around all the time. For most this is not true; it is too much stimulation. Most do best with no more than a few people at a time. I know that this is true of my husband and from what I have read from other LBD spouses. Too many people in the person's home, a crowded restaurant, or any place with more than a few people can cause problems. Early on in LBD, adult day care may be an option, but later I don't think it is a good option. I'm glad that it worked for your mother!

  4. Kathy, so much of what you write expresses what I am going through. Maybe we are moving through this in tandem. I would love to be able to have my husband in an respite center for a week (more!) so that I could visit with our daughter and her family thousands of miles away. I have all of the reservations that you have. I can't remember if you have short respites during the week. This helps me so much. I am very fortunate that the first person worked out and has been coming three times a week for fours hours for a year. I'd love to have more, but I have not found anyplace here that I would feel comfortable leaving him at. If you find some place, you can provide very specific dos and don'ts support by your husband's doctor. Do you have someone who could visit him while you are gone? Yes, you do need some respite. My concern for me is that I would not have respite unless I was quite confident that my husband was in good care; I could worry too much and not enjoy my time away. I hope that you are able to work this out, Kathy.

  5. Hi Rosemary,

    Thank you for taking the time to respond :)

    I'm sorry you are having to go through this also.
    I do have an aide that comes for a total of 10 hrs a week. I am very grateful to have it too. It's just enough time to get errands run and gather groceries. This is a service provided through the V.A.

    I have suggested to Hubby about a day facility but he will have no part of it and is very adamant about it so I stopped asking.

    On the subject of day facilities, I was SO excited for Sue when her mom entered "school" and looked forward to the bus picking her up. I am happy that she enjoys the company of others and is thriving well.
    Hubby on the other hand does not do well with the extra noise or commotion. He can not process it. I made a mistake of taking us out to a larger restaurant once during a busy time. Let's just say it didn't turn out too well for him.
    We try to keep large busy places to a have to only and family gatherings to a minimum. Hubby stays in our room all the time and I can always close the door if he needs to get away.
    With respite I worry the same as you.

    I did make the call today.
    I actually hung up once, yelled at myself and redialed.
    The funny (ha ha) part, NOBODY was available to talk with me! LOL All that stress for nothing!
    I am not taking it as a sign that I should give up so tomorrow is another day and maybe I won't be so anxious to make the call.

    I hope you can find respite for yourself Rosemary. I know you would love to spend some time with your daughter :)

    I wondered what I would do.
    Sleep sounds wonderful but getting out of this house sounds just as wonderful so maybe I will rent a nice hotel room and sleep :)


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