May 13, 2010

Is it Time?

This all sounds so sensible so why do I feel like I am convincing myself? Why am I so uneasy?.....

By Kerry Runyeon
+Alzheimer's Reading Room

Is it Time?

The last couple of weeks I have been preoccupied, worried, and out of sorts. I actually wrote this piece over a week ago and am now just finding the courage to post it.

I feel I am letting my mother down, myself, my children, and all who read my blog.

Any comments or feedback regarding this issue would be appreciated. I am sure many of you have had to make this same decision.

Well the call came a few days ago. A bed is available for Lily in the Memory Support Center at a local retirement home.

What? I thought you said the wait list was a year?

So what if I am not ready? She goes to the bottom of the list.

Why did I put her on the list you might ask.  Well a few months ago I noticed Mom declining (which I later determined was related to her thyroid level) and I thought perhaps I should call around to various nursing homes thinking ahead to a time when perhaps it became too much.  So in the end I placed her on the two best nursing home lists in the area and was told it would be at least a year.

So only a few months later I get the call. My immediate reaction was no it is not time.  Then mulling it over I thought I would at least go visit which I did. A good friend who just lost her mother to Alzheimer's recently went with me.  She wanted to offer support and see how this center compared to where her mother stayed.

The Memory Support Center was absolutely beautiful, state of the art. Each patient has their own private room.  The layout is in a pod fashion with 28 patients on the first floor and 28 on the second with an outside atrium garden in the middle. The ground floor is for patients in good physical condition and the second floor offers more assistance for those with increased physical limitations. Lily would be on the ground floor.

The average MMSE scores range from 9-15. Lily's most recent was 12.

The unit is well staffed and has a low turnover rate.

Activities are varied and abundant and each patient has an activity program designed just for them and their capabilities.The staff is well trained to live in their world.

I asked the admissions gal Dana who was very nice and knowledgeable how Lily would be drawn into activities.
"Would you say to her, 'Lily would you like to participate in this activity?'" Dana replied, "No because she would just say no. We would say, 'Lily how about helping me with this.'"

Exactly what I wanted to hear.

My friend Jenny kept saying, "Kerry you need to jump on this. There is no comparison with this to where my mother stayed."

Logically I know this. I know that Mom will continue to decline. Times are already getting tough especially when the house is quiet with just me and her. The family at home adds variety, laughter, and banter. When Ryan is off to college, Emily on to wherever, it will be just me, Dan, and Lily............

Many times I already feel her angst when I am busy with what I need to do.  She has no real interest in TV anymore, reads headlines and less content, and needs to be directed to try to keep her busy. When not busy she settles into the "I need to go home" routine.

I do pretty well but must admit moments of frustration do occur, and I see that increasing with less support at home.

What to do?

I believe I am going to go forward with this for several reasons.  Lily is on medicaid and to have this opportunity with such a fabulous facility is hard to pass up.  I know for sure if she had a crisis and I had to place her in a home the odds are that a room there would not be open. She would end up wherever a bed might be available and I would be kicking myself for allowing that to happen.

My children are growing up. My husband will soon retire. We hope to travel more which
will be an issue. Do we bring Lily with us everywhere or try to find someone to watch her who is trustworthy, reliable, and available and that is not easy. Respite care for all practical purposes is not any help as you do not know if you have it till the last minute so how can one possibly plan a trip. I also feel putting her in various facilities for respite care would be less ideal than placing her in a permanent spot.

The Memory Support Center is 10 minutes from my house which is perfect. I can visit her daily making sure her hair and make up are on and that she is properly dressed. I can bring her home every day if I want and when we are gone I know she is in a safe, familiar place, hopefully.

As my friend Sande said, "Kerry, the worst that can happen is if it does not work out,  you bring her home. You don't have to leave her there."

Several of my other friends say, "Kerry you have done so much for her the last 3 years. You and Dan deserve some time to yourselves."

My children initially were not so understanding. "Mom I will be so mad if you put Lily in a nursing home." said Ryan. Emily said, "You know Mom that will be the end of Nana if you put her there."

Today with 24 hours to think about it Ryan said, "You know Mom I want her here but I don't want to tell you that because I know you are the one who does almost everything for her."

As I pondered this today I thought of all of this and what my children would think of me if I place Lily and I thought perhaps I will teach them balance. We provided Lily with 3 wonderful years with us as a family and I certainly hope that will continue albeit in a different situation but I also do not want my children to feel that they must take care of us someday in their home. I do not want to be a burden on them.  Perhaps they will see the balance in this.

This all sounds so sensible so why do I feel like I am convincing myself? Why am I so uneasy?

As the admission gal said the time is never right. Perhaps that is the case.
Kerry Runyeon, RN, BSN is the primary caregiver for her mother Lily. Kerry chooses to focus on the humorous aspects of her journey with Alzheimer's disease. Her blog Living in the Moment with Lilybird is a reflection of her experience. Kerry resides in Dayton, Ohio

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