Friday, April 29, 2016

When it's your parent

Alzheimer's is one of, if not the, saddest diseases out there.  It steals your loved one before they are physically gone.  Sadly, my family has seen far too much of this disease and quite frankly, I'm desperate for a cure or at least a solution to keep our loved ones themselves for far longer.

I was able to go to NC and see mom this past weekend and while the trip was mostly to discuss getting some in home care for her, I really needed to be able to see her in person.  It's one thing to talk to her on the phone, but sometimes you just need to put your arms around her and show her how much you love her.

It truly was so sad to see how much she has declined in a year.  She is just not mom, really.  She has moments when she is, but for the most part she is a shell of who she was. 

She has started hoarding things in her room and things just don't make sense where she puts them.  Mom was always an immaculate house keeper and now she isn't.  She was always one to present herself very well with her clothes and now she struggles to dress appropriate for the weather.  There are so many times when you just see her eyes glass over and you know she isn't really with us at that moment and that is hard to watch.

She doesn't remember to eat or take her medications unless someone is actually there to put it in front of her and make her eat or take her medicine.  It's just so sad to watch.  They truly do revert back to child like behavior at this point and that puts loved ones in a hard position.  It's hard to balance making sure they are safe and ok when they are still your parent.  You (or at least I do) walk a fine line with still respecting the fact that she is the parent and knowing there are decisions that have to be made for her well being and not wanting to upset her or take too much of her independence away.

I am truly grateful that my sister, Paige, is so close and willing to take time away from her life to make sure mom is ok, that she has eaten, that she is dressed appropriately, etc.  If you have never had to be the care giver for someone in that position, it would be hard to even comprehend what it takes out of you.

I was only there for 4 days and not 24 hours consistently with mom and I was exhausted.  It becomes more emotionally and mentally exhausting than physically.  It is difficult to explain unless you experience it yourself. 

Paige and I decided to clean mom's room, drawers, and closet while I was there.  We wanted to organize it and put her winter clothes away so she would have only options for weather appropriate clothing.  We spent more than 4 hours working in her room and finding some of the oddest combinations in drawers.  At some point you might as well laugh or you would just cry.  We chose to laugh and have a good time with it.  We had mom sit on the bed and try on clothes to make sure things fit and we would start a pile for Good Will and then put winter clothes in her hope chest hoping out of sight out of mind.  We would find her pulling things from the Good Will pile and folding them.  LOL!  It was fun made out of a sad situation. 

We completed her room and Paige made labels for her drawers.  We went back over after our meeting on Monday to take her to lunch before I flew out only to find her in a turtle neck!  How in the world did she find that?  It was almost 80 degrees outside and here she is dressed for winter again.  We just looked at each other and laughed and let her wear it.  When we returned her back home we went in to help her with a few things only to find random things in wrong drawers again.  How did this happen so quickly again?  It had been less than 24 hours. 

Here is the thing about this disease.  There is no rhyme or reason to what they do or why.  It's not like you can scold them for it, because they can't help it and they don't know why they did what they did and may not even remember they did it at all.  You just have to suggest that it be placed somewhere else or just move it without speaking a word.  You also can't say, "don't you remember"?  No, they don't remember.  If they remembered they wouldn't be asking you again or they wouldn't be looking all over the place for things they misplaced.  It's hard not to say that or even be frustrated, but reminding them that they don't remember only kills their confidence and spirit, but it does no one any good.

So now we find ourselves with getting mom some in home care and while it is only 2 days a week and 4 hours each day to start, at least it is a start.  It's my hope that this will give my sister some peace of mind when she can't be there, as well as Don, but also that mom is safe and not alone so much.  Luckily our aunt Frances will have mom on Wednesday for bible study so that will only leave Monday and Friday with mom alone most of the day.  That is comforting for now.  I know at some point she will need someone with her 24/7, but for now this will help.

If you are living with and caring for a loved one with Alzheimer's, I am so sorry.  You know all too well how challenging and heartbreaking it can be.  However, if you are the main care giver or play a huge role in the care giving, I urge you to make sure you take time for yourself and accept help when you can.  The worse thing for the care giver and the patient is for the care giver to get burned out or frustrated.  It could be easy for that to happen as it takes such a toll on your life and in every aspect of your life.  No one person can do this alone.  You must have help.  Don't try to be a "hero" and think you can take it on all on your own, because you can't and it won't be helpful to anyone. 

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