Wednesday, March 23, 2016

Having an eye opening experience - Alzheimer's

Well, thanks to my sister, Paige, I purchased a book called "Before I Forget" by B. Smith & Dan Gasby (her husband).  It is written by both B. Smith and her husband, Dan.  While most of the words are coming from her husband, I do love that B. has some of her own words in the book as well.  Hearing from the horse’s mouth so to speak.

Our mom (ironically referred to as B. a lot) is currently in the throes of Alzheimer's.  It is a heartbreaking disease that impacts the whole family, not just the patient.  I'm not completely finished with the book, but I'm close.  I suggest if you have this dreadful disease in your family that you get this book and read it.  I'm shocked (not sure why) how text book our mother is.  

I don't know near enough about Alzheimer's, but since mom was diagnosed I have tried to educate myself as much as possible about this disease so I could at the very least understand.  I also want to make sure I treat mom the way she should be treated and often times I think it's hard to know how to respond or talk to a person dealing with this disease.

For instance, making the patient feel stupid or embarrassed for forgetting or losing something does nothing for the patient or yourself.  First, he/she cannot help or control the fact that they misplace things or have little to no short term memory (which is the first to go).  Second, they feel bad enough and making them feel worse pushes them more and more into isolation.  That's right, patients (even the most social ones) will begin to socially isolate themselves and the lack of socializing can only speed up this deteriorating process.  No good comes from that.  Besides, if you are a caregiver and/or the spouse, you will eventually feel guilty for responding that way and what good comes from that?

Behaviors change as well and the person you once knew is no longer there, but their physical being is.  That's a hard one.  You see them looking as they always have, yet they are not themselves. 

Today I had a heartbreaking conversation with my mom.  It wasn't that she felt sad, but she couldn't find her words and her conversations made no sense.  If my mom could see this or read this and understand any of it I promise you I would not be putting this out for the world to see, but the world that is dealing with this disease needs to read these words, because it isn't going to just simply go away or be cured because you ignore it or choose to believe it isn't that bad.  For our family, I believe it's that bad. 

It's my belief, although I have no medical expert telling me this as she rarely goes to the doctor for Alzheimer's anymore, that mom is fast approaching the last stage.  Based on the book scientists have two "stage" references if you will.  One side states there are 3 stages to Alzheimer's and the other side states there are 7.  Whichever stage you choose to agree with, I believe mom is in the last stage of 2 or 6 heading into 3 or 7.  I base that assumption on the facts in this book and having read the descriptions of these stages.  That's scary for a couple of reasons.  One, it feels like the end, and two, she could live as long as 10 years in the last stage.  The reason the second is so scary is that she doesn't deserve to live her last days on this earth in this state and if she could control it she would not choose to do so.   Besides, think of the family caring for her for so long.  This disease consumes every minute of every day.  We are lucky that our sister, Paige, is close enough and willing to go by mom's daily (sometimes multiple times a day) to check on her and she gets calls from mom some days all day long for the same things.  She does most of the care giving.  She schedules and goes to most if not all her doctor appointments and makes sure she is dressed appropriately, etc.  I don't know what all Don (my step-father) has to deal with, but he works a full time job and crazy long hours and then goes home to Alzheimer's.  No one is usually there with them so that's why I don't know what he deals with.  I just know this isn't something that can be turned on and off.  It is there and only gets worse.

Caregivers, in my opinion, have it the worse.  They know and understand that things are wrong and can tend to get frustrated and angry and their lives have literally stopped in some respects, but definitely changed in all respects and yet the patient may get frustrated and angry, but luckily for them, they soon forget.  The caregiver doesn't forget. 

One thing I have definitely picked up from this book is there comes a time when outside care is required.  Not only for the patient, but for the caregiver(s).  They have to have down time and a break away from all this or they will burn out and start resenting the patient and that is no good for anyone.  I believe it is time for mom to have outside care.  Now, convincing her to allow it may be a different conversation (or blog) all together, but at this point in time I don't think she really should get a vote.  In the long run she will benefit just as much if not more than my sister and step-father. 

In addition, if you have a loved one battling this disease, first, I'm so sorry, but second, make sure you see them or at least speak to them on a regular basis.  You will have to be the one to initiate the call or visit.  Remember earlier I mentioned they tend to isolate themselves from being social, that goes for family and close friends too.  They don't mean to do that, it just becomes easier to do that than to work so hard to keep up with conversations and their surroundings.  Your talks don't have to be nor should they be long or even in detail.  All I have read it is actually best to keep conversations short and very general.  Ask he/she the questions like how are they and how is their day and ask about the weather or things they love.  Let the patient do more talking and you do more listening.  In mom's case she loves her dog, Sophie.  If you talk to her at all, Sophie's name will come up.  That's what she knows, understands, and loves.  She gets unconditional love and non-judgment from Sophie and she doesn't always feel she gets that from other people.  As much as we might try to convince her otherwise, she will feel like she is being judged or will feel shame and she doesn't get that from her dog.  So call regular or visit if you can and try to not take what might seem like she isn't interested or engaged personal.  She is as interested and engaged as she can be and she wishes she could be/do more, but she can't. 

Alzheimer's has no cure and there is nothing that will stop it and very little will slow the process, but there are things and medication that can help manage through this disease.  Diet, exercise, and medication are the top 3 things that are mentioned in almost everything I have ever read about Alzheimer's.  Antidepressants are supposedly a huge help as depression is very common with this disease and if you can help the patient feel less depressed it will make the moments when they feel frustrated and trapped much easier to navigate through.

If you have ever had the opportunity to know my mom, you know she was always very social and was big about family and loved holidays and was a good cook.  She is very little of those things now and it's not personal.  It's just this disease.  That's exactly what this disease does, it robs us of the person we knew and leaves their physical body making it even harder not to see the same woman she was before this dreaded disease.

It takes a lot of love, patience, and kindness to deal with an Alzheimer's patient and I want to thank especially my sister, Paige, for all she does for mom.  I know Don must appreciate the help and it's my hope that we will be able to get some in home care so that Don and Paige have someone else to help with the caregiving. 

Thank you to B. Smith and her husband Dan Gasby for putting your story out there. This is not easy to talk about and your words have been helpful for me. I hope anyone with a loved one with this disease reads this book. 

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