JOAN’S BLOG – MON/TUE, AUGUST 10/11, 2009 – SOONER RATHER THAN LATER

It has been said by countless caregivers and professionals that one must make difficult decisions “sooner rather than later” when dealing with Alzheimer’s Disease.  I am learning what sage advice this truly is.

As my regular readers know, I made an early decision to move into an Independent Living Villa because I saw that my husband had no activities and socialization where we live; that neither he nor I can keep up with home maintenance; and I need a support system close by. Sooner rather than later.  Sid is getting more forgetful and confused every week. If I wait too long, he will miss out on a good quality of life, including activities and socialization, that the Independent Living facility offers.

Our trip last week also reinforced the “sooner rather than later” philosophy. Thanks to his medication, it was the best trip we have had since his diagnosis. I did not have to deal with one single meltdown. He was calm, cooperative, and “went with the flow.” But I saw the future of our travels, and it was not pretty. Currently, he is so forgetful, and confuses so easily, that I need to not only handle all of the documents, but I also need to keep track of his ID, boarding pass, and tip money. But, while we are sitting at the gate waiting to board, he IS still able to get up from the wheelchair, find his way to the bathroom, and back to the gate ( He keeps repeating the gate number to himself.) I do not think that is going to work much longer. As I sat at the gate this time with the rolling carry on bag, the computer bag, and my big “carry it all” bag, I thought – “Okay, how am I going to do this when he can’t find his way to and from the bathroom? I’ll have to put all the bags on his lap, wheel him to the bathroom, wait outside for him, then pile everything up again, and wheel him back. But what about me? What am I supposed to do when I have to go to the bathroom? ” Will I be able to travel alone with him? I don’t have anyone I can take with me. Will that be the end of our travel together?

That’s when I realized there was another dimension to “sooner rather than later”. It meant that we had to get in all of the family travel very soon. Which is why I made the immediate decision to spend Thanksgiving with my sister in Chicago, before we are not able to do so. It is why I made the decision to go to San Francisco in January to visit our son and daughter-in-law, because I do not know how much longer Sid will be able to travel. Or should I say, how much longer I will be able to handle traveling alone with him.

“Sooner rather than later” applies to every stage of the disease. In the beginning, it means –get to a Certified Elder Law attorney PRONTO, immediately after diagnosis. Get all of those papers in order while your spouse still is able to comprehend what he/she is signing.

As the disease progresses, it means – make sure your living conditions are conducive to your long term needs. If you are going to need Independent or Assisted Living, do your research early, and move before it becomes an emergency. Three years ago, when we moved into this house, I thought I would live here forever. Even with the diagnosis firmly in place, it never occurred to me that this house and neighborhood would not suit our needs long term.

Research Day Care facilities and methods of paying for them “sooner rather than later”, so you are not panicked, stressed, and overwhelmed when you do not have a minute to yourself in a 24 hour day, and need to place your spouse in Day Care immediately.

Research nursing facilities and methods of paying for them “sooner rather than later”, so you are not on the floor in the middle of the night, soaked in urine, trying to lift up your spouse, clean, change, and settle them down, while you are sobbing – “I can’t do this anymore.” “I waited 2 years too long to place my husband/wife in a facility, and now I am dealing with the repercussions of my own failing health” is heard countless times from spouses who could not bear the thought of placing their husband/wife when the physical, emotional, and mental burden of caregiving started to take its toll on them.

If you have the funds for at home care, research agencies “sooner rather than later”, so you are not burned out and ill before you get the help you need.

No matter how much I learn from your experiences, nothing is as eye-openingas an experience of my own. Being too stressed, tired, and downright incapable of handling home maintenance; watching Sid sit with nothing to do day after day; seeing the future airline travel problems, spurred me to handle these problems “sooner rather than later”. I hope you too, will consider this to be wise advice.

MESSAGE BOARD TOPIC: Sooner Rather than Later

Feedback to joan@thealzheimerspouse.com

©Copyright 2009 Joan Gershman 
The Alzheimer Spouse LLC
2009 All Rights Reserved

The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.

The Alzheimer Spouse LLC 2009 All Rights Reserved