Thursday, January 7, 2016

Dementia and Mom

I don't like this subject, none of us do but it is a fact of life which many of us are facing with an elderly parent or sibling. Speaking from my own experience, my Mom is a victim of this nasty 'disease, condition, illness'. I didn't know what to call it and then I found online a few blurbs here and there.

Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer's is the most common type of dementia. Dementia is caused by damage to brain cells.

 I have posted some of the notations within this post. I need to remind myself of these facts so I, in turn, can understand exactly what Mom is going through in this later stage of life.

Dementia is not a specific disease. It's an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. 

Memories of early days with Mom
Mom will be 90 in April and wow, she has led a pretty awesome life so far! Mom has been the pillar of the family for a very long time, we are not surprised that she is winding down.
Mom now still very healthy in 2015
Does our mind just get so full of all of the 'stuff' we are trying to remember that it starts to purge the new stuff that comes in? Wouldn't you think that it would be the memories of yore that are deleted instead of the more recent happenings? Which would be better?

To be considered dementia, your loved one’s symptoms must interfere with his or her daily life. The symptoms also need to affect more than one category of brain function, such as memory, communication, judgment, or language.

We first noticed the symptoms in early 2010 but only when our attention was drawn to them by Mom's partner, who lived with her day in and day out. The family didn't see it for quite a while because we only saw her periodically. 
Once we started really paying mind to her, we noticed things for ourselves. She would surprise the heck out of us with very clear memories of her past, and without the new knowledge we had of dementia, most of us would think perhaps she was fine after all. Wrong.
Coming together to clear out her house
We acted quickly after her spouse passed and put her little house on the market and sold her car. 

Things at first started slowly, the decline I mean. Looking back, I believe we acted exactly on time even though it was difficult for her at times. When she drove places, she would head in the wrong direction and see no reason why she shouldn't stop at a complete strangers house to ask for help. 
She would wonder about a trailer she owned and ask about the house. Mom had some trouble when we had to tell her that certain pcs. of furniture had been donated or given to a family member.
Each family member took what we could rather than donating it
 She would become aggravated thinking that she had no control and 'they' sold her house and things right out from under her! We 8 offspring were the 'they' she referred to. It was sad but decisions had to be made and we kept her in the loop as much as possible. She just didn't remember that part of it. 

There are five stages to dementia. 

The five stages describe a patient’s ability to perform in six different areas of cognition and functioning: orientation, memory, judgment, home and hobbies, personal care, and community.

Mom's stage of dementia began to deteriorate more rapidly and yet it was so much easier for us sibs to bear given that she was totally aware of her memory loss.  We'd heard horror stories of mild mannered parents becoming increasingly  bitter and irritable when it was pointed out to them, adamantly denying the obvious. Mom, on the other hand would ask a question of me within 10 minutes of having heard the answer and then laugh with "oh, I'm sure I've already asked you that. I don't know why I can't remember anything lately!" It didn't take a rocket scientist to realize that the more we filled in the blanks for her when she questioned us, the more dependent she became. In a way she became lazy and found it easier to ask then to think for herself. So, my one sister and I decided we were going to make her work a little harder at remembering, while she still could. Sometimes it worked to turn the query around to her and say "Mom, you know, if you just think for a minute, you know my daughter's name". She most often would remember.

When you learn about the five stages of dementia, you begin to understand how devastating these symptoms can be as they get worse. The majority of dementia cases are progressive, but there are some that are reversible.

I can remember spending time with friends who used to drink to excess in our company. The constant repetitiveness was very frustrating made even more infuriating because they were doing it to themselves.  Patients of dementia do not have that freedom of choice and that makes all the difference, we do not lose our patience. It is not an option.

If dementia is caused by an infection, a nutritional deficiency, as a side effect of a medication or from brain bleeding, the symptoms can be stopped and reversed as long as the underlying cause is treated. 

Since Mom's dementia was not the result of an infection or any of the above mentioned causes, it is not reversible and medications can only touch on slowing the process. We notice extreme changes now, so much so that we have stopped 'taking her out of her comfortable environment' any more than is necessary. Just over the last year we have noticed that she gets very agitated when not in her surroundings and becomes concerned about who is taking her home. She tries hard not to lose sight of her 'driver'. 
Mom, my two and me, 2014

In some ways I'm sure it is a comfort to her when we have a family gathering and all or most of us 6 sisters are in attendance. We look a lot alike and Mom still recognizes us, a blessing we know is short-lived, so if she feels lost she makes her way to one of us and latches on. The role of parent/child has reversed and when we think of how strong Mom used to be, the ruler of our home while our dad worked, we can only realize how devastating this would be to her if she was more aware of what is happening.

After reviewing the symptoms of Alzheimer's, it is obvious to me Mom's decline is leaning towards this disease. Short term memory, confusion, disorientation and depression are what we are witness to in these first five years of her dementia. 

There are blessings in disguise and sometimes as a family we have to talk about those things amongst ourselves. It helps us, too, to deal with what our parent is experiencing. So, yes, we may chuckle at little things that we are grateful for, even though some moments are sad. 

For example, we know that we can visit briefly or spend 3 to 4 hours with Mom on a great afternoon eating, talking and doing puzzles. We can say our goodbyes and walk out the door of her apartment after a challenging but great time. If we turned around and walked back in within 10 minutes, she would welcome us with open arms saying "oh! what a lovely surprise!"  She is always happy to see us and that is refreshing and so innocent.

After Mom's house sold, Bill and I provided her with a place to live for a couple of months while she waited for an apartment to become available in Hanover, near my sister. When she was first moved into her retirement apartment she really wished for company in the form of a cat or a small dog. She loved Clemson, our family cockapoo and since he was a lapdog, he loved her too.
Mom taking Clemson for a walk in 2010

As a family, knowing that she would eventually not be able to look after it properly just like she would forget what day it is and take the wrong pills,  we discouraged it best by not discussing a pet of that type with her. She soon forgot about the desire for a 4 legged companion..........and then realized on her own that it wasn't a good idea in case she forgot to feed him. Bless her heart!

She still wanted and needed something so we mentioned a budgie. My sister lives 5 minutes away and does the weekly cleaning of her apartment so we all knew that the bird would get fed, watered and cleaned out once Mom unintentionally neglected to do so. She loved that bird until last week, Tina, died. Mom was in tears at breakfast and my sister was called in to take care of the situation.   Out of sight, out of mind, Tina was eventually forgotten and my two sisters have replaced her with another budgie that Mom is going to love just as much. This one is a different colour so perhaps a wee bit of a test for her memory when she is alone. Whether she remembers Tina, we don't know but it doesn't matter. At least we know the grieving process was short-lived and thanks to her dementia she isn't dwelling on it anymore. 
Easter with Mom 2015
Now, in 2015, we see an increasing decline in what she remembers, what she cares about and what she wants to do on a daily basis. In 5 years she has lost interest in most of the things going on in the retirement home. There are bus trips, card games, sing-a-longs etc. All things Mom used to love. She can make up a multitude of excuses when my sister invites her to go for a walk on a balmy day as a reason not to go. My sister notices more than the rest of us but Mom has really slowed down. Through no fault of her own she takes 30 minutes to button her own blouse because she can't recall if she is putting it on or taking it off. 
Dinner in Mom's party room, 2015

Our sister has the patience of Jobe and the rest of us who live further away and can't be at Mom's 'beck and call' are so very grateful for Donna's care giving ways. Simple things like hygiene and clean clothes go by the wayside because Mom can't remember when she showered last or changed a piece of clothing. We try to come up with ways to be diplomatic in suggesting she find something clean to wear, still afraid of hurting her fragile feelings.

The best advice we can give ourselves and heed is to take advantage of the 'now' in our visits, remember that the visits are exactly for that moment and it is only us as individuals that take the memories away with us. I try to call more often and have simply stopped asking her questions "what did you do today? what was on the menu? are you working on a puzzle?"

Mom's dolls

Mom and her remaining siblings 2015
She doesn't know the answer to those things. Instead I talk about me and relate comical stories from home, from our past or about Clemson on our rv travels. She loves to hear about our trailer and camping as she has some recollection of it being in her life too. My sister picked up a few dolls for Mom so she could braid their hair if she wanted and that is something else we talk about. She describes them to us when we call. It doesn't matter how many times.
Family picnic with 3 girls,  2015

If you are living with someone like this, you, like me, have no doubt learned to develop more patience with them than you ever thought possible. I know soon she may not know my children, my husband, me and things will get even harder so I'll enjoy what I can with each and every visit. Now

I will always remember how she looked after me while growing up, my dating years, my marriage and raising my children. Mom has always been there for me, many many years of care and for that I can certainly allow her that faltering forgetfulness for as long as she needs me to.

Thank you for reading.

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