For life

When I was a kid, my friend Laura and I would often venture to her grandparents by the Miner's hall.  We would listen to her grandpa and her grandmother would make us tea and cookies.  In fact, it was Mrs. Smith who taught me how to brew a proper cuppa.  To me and still to me this day, that's the image I have elderly couples.  They downsize to a smaller house that is adorned with the remnants and knick knacks of their life together and spend their days together.  The old folks home, in my mind, was full of widows and widowers.  It was a place where a husband would go if he lost his wife because he couldn't cook or clean and it was a place where a widow would go because she was lonely.  Of course, I have since learnt that is not the case.
At mom's facility and at many facilities across the country there are couples who reside at them, together.  Many are in the assisted living quarters and some live on different wings of the facilities because they have different needs and capabilities.  There is one couple that mom and I dine with everyday.  They moved into the assisted living side, 7 years ago, together.  Over time the wife developed dementia and had to be moved out of assisted living.  That must have been very hard for Bob.  Everyday at lunch and dinner he comes to assist his wife with eating.  It is the most loving thing to watch.  Some days the staff will try to feed her before he  arrives and she will close her eyes and pretend to be asleep and some days she will simply say "No".  She isn't asleep and she isn't being finicky, she is simply waiting for her husband to come and he always does.  If for some reason he can't, he makes sure to find me or a staff and is adamant that we tell his wife he won't be there and always says "Make sure she understands or else she'll keep waiting for me and won't eat".  It's true, if she thinks she is waiting for Bob, she won't eat but if she understands that he isn't coming, she will.  They recently celebrated 65 years of marriage.
One day Bob asked what my husband thinks of me coming everyday to feed mom lunch and dinner.  I had to respond that I'm not married.  I had to explain that I'm not married and that I've never been married.  "Oh," said Bob, "are you a lesbian then?" he asked.  I laughed because when you are 90, I guess you can ask any question you want.  I told him that I'm not and that I would rather light myself on fire, than get married, my standard answer to the question.  Bob said "Well you must be one of those who think it's an institution".  I had to explain to Bob that wasn't the case either.  I believe in marriage and I admire people who are committed to each other, the marriage and the vows but I simply haven't met someone who is amazing, and who takes those vows seriously.  I explained to Bob that most people today go into marriage not with the belief that it will be forever but with the belief that they can always get divorced and no one wants to put the work into making it work forever.  Bob nodded and said "Well that's good and you just keep on waiting then because marriage IS work and you get married for life".
There is a gentleman who at least once a week gets me to relay a message to his wife who is on another ward. "Tell her I love her and that I'm thinking of her," is what he always gets me to say and I do.  Sometimes she doesn't know who I am talking about and other times she sends a message back and it too is always the same message "Tell him I miss him".  There is another couple who's children have arranged for a private worker to come in everyday at dinner and assist their parents with eating so that they can have at least one meal together a day and at least one hour together a day.  Then there are some who walk around in sadness because their spouse has passed.  My time at mom's home and my time with the couples and widows and widowers that reside there has given me a different perspective on marriage and my talks with Bob have really helped me gain that perspective.
Many times I have asked Bob how his marriage has endured and if it was always happy and if he ever considered wandering, etc, etc.  Bob has graciously always answered my questions with the truth.  He admitted that by his estimates, if he added all the nights he spent on the couch, it would total a good year, maybe more.  But he also told me that the time spent on the couch was needed because both him and his wife didn't sleep and the quiet of the night forced them to think about the issue and by morning one of both of them would be willing to admit the wrong and then they would work on finding the compromise.  "Marriage is work and negotiations," he said.
One day I gave Bob the movie 'Jerry Macguire' to watch and I asked him to give me his opinion on it.  A few days later he watched it and over dinner we had a big discussion.  There were elements of the movie that he liked.  "Working together for a common goal is important," he said.  So I asked him, what was your common goal and he laughed "Well, we were farmers so it wasn't to be rich or famous like in the movie, our goal was happiness and we did what we needed to be happy with each other and with our life and we did it together".  I asked Bob what he didn't like about the movie and he piped up, loud and clear "That you complete me stuff is utter bullshit."  Now I laughed out loud at that one because I too think it is the stupidest line in the movie.  Bob explained that he and his wife had lots in common and they had lots of differences too but they were both 'complete' people before they got married.  Bob explained to me that the commonalities with him and his wife made some things easier in the marriage but it was the differences that made things interesting in the marriage.  He likened it to two links on a strong chain.  The links are solid and complete and on their own are strong.  When you put two complete and solid links together, they are even stronger.  I had my 'aha'/Dr. Phil moment right there and then. 
So, I no longer would rather light myself on fire than get married.  Not that I'm in any way, shape or form 'marriage minded'.  More like if Mr. Amazing were a complete link, I'm ready to consider linking together and 'consider' is the operative word there.  As this blog is read by over 8000 people world wide, maybe Mr. Amazing lives in Ireland or is named Johnny Depp or Adrian Brody.   

The Dementia Diary: My special Christmas gift

The Dementia Diary: My special Christmas gift: X-mas for mom was great.  My dad made an album of all the cards and wishes and letters that she received and they spent an hour on x-mas day...

My special Christmas gift

X-mas for mom was great.  My dad made an album of all the cards and wishes and letters that she received and they spent an hour on x-mas day looking over them and reading them.  Another gift was a proper turkey dinner.  Mom's swallowing has improved and as long as she is reminded to chew and then swallow with liquid, she is fine.  It has improved so much, I convinced the nutritionist to observe her and we started mom on small portions of regular food on Christmas Day.  Then, my gift to mom was a SKYPE with family that could not join us.  She was thrilled to see my brother, his wife and the kids.  She knew who everyone was and even noted that David is now wearing glasses.  But I will say that I received the greatest gift.  It's a gift that I have always wanted.
Anyone who knows mom and I will agree that we had a very unique relationship.  All mothers and daughters have their differences but mom and I had more than the norm.  For pretty much my entire life everything I did in some way, shape or form revolving around my relationship with my mom.   To keep mom happy I did the things that she liked, but I hated.  For example, ballet and music lessons.  Regardless, anything I did, I did well and very well so that she would happy with me, so she would be pleased with me and proud of me and love me.  I was always chasing the natural love.
But I never got it.  My mother's love always came with a condition.  I will love you if... was always the message.  I always felt she didn't love me, who I am and if I was someone different, she would.  Her praise was never real praise.  It was more of a comparison and at times even criticism.  Yes you did well but _______ fill in a name, did better.  It just always seemed to me, as a child, that I was never good enough.  I new that I was, but never in my mother's eyes was I good enough.
I realized at a very young age that is wasn't my fault.  Mom was the way she was because of her mental illness and the drugs that stopped her from getting psychotic.  I knew she was a good person at heart but mom had a deep hole in her, an empty hole that could never be filled.  She tried to fill it, my father tried to fill it and us kids tried to fill it for her.  We did things that she could never do or wouldn't do to try to fill that hole that was deep, deep inside her soul.  It never could be filled and eventually we all just gave up and accepted that this is the wife, the mother, the sister and the friend that we have and will always have and that was okay.
Still, always in the back of my mind was a fear.  The fear was that I would never please my mom and that she would someday pass away and I would never know the feeling of true natural love from my mother.  A fear that I would never know the feelings of seeing your mother accepting of you and proud of you.  It didn't matter what I have done in my life or what I have yet to do, I just always had this fear and at times anger that I will never know those feelings or the love.
2012 was a crossroads year for me.  The mountains kept calling me and I didn't listen and I was slowly getting buried in the desert sands of Kamloops.  I had to do something and knowing that my father and my mother needed me, I went home.  When I got home, my mom was literally one foot from the grave and at first I resigned myself that I had come home to be with her on her last journey.  Once the shock wore off and I had completed writing mom's obituary and on paper, not just in my head, a feeling came over me.  It was a feeling that I knew.  The feeling was telling me that I had to do better.  So I did better then just keeping my mom company and reading to her.  I got involved and active in her care.  I questioned everything from the food she was eating, to the meds she was on and to the recreation that she wasn't doing.  I convinced them to change her diet and assured the professionals that I would make sure she would be alright.  I convinced the doctors to take her off of the medications because something told me that she didn't need them anymore.  I made her get active again and if that meant I would sit and help her beat a drum, then I would beat the drum with her.  Over time, mom came alive again and literally reborn.  I say reborn because, yes it's still my mother but she is a different person.
Here is what I think has happened.  The Lewy bodies that ravish my mom's brain tissue and create the plaque that prevents her from walking and make her shake and forgot have also eaten the parts of her brain that made her mentally ill for all of her adult life.   So the real Elaine Mary Obrigewitsch had emerged.  My mother.  This is now a woman who tells me everyday, twice a day, "I love you Lisa-Marie".  They aren't just words either.  For no reason sometimes, she'll grab my hand to hold it.  We'll glance the pages of Chatelaine and she'll see something and say "You would look good in that" and it's something that is MY style, that I like, not what I grew up with, of her always criticizing my choice in clothes or style.  I'm trying to grow my hair, again.  Most of my life I've kept it short and my mother always criticized it.  But last week she gently brushed my hair from eyes and said "You should cut your hair, it hides your pretty green eyes".  I nearly fainted but I was so happy that I had to hold back the tears.
I got the greatest gift on Christmas Day.  I was helping was a resident near to our table.  I helped her to sit down and then I went and got her a coffee.  She thanked me and said "What would do without you".  I jokingly said something back and sat down beside mom.  Mom looked me straight in the eyes and said to me "You make me proud, that's my girl".  I have waited all of my life to hear those words and on Christmas Day, I heard them, loud and clear for the first time in my life.  I have been chasing that cup of love all my life and I thought I would never get. On that day, I got it.
I have wondered many times over the past months as to why I was led home.  I thought it was to help mom but now I see, it was to help me too.  So now, both of us are healed.

The Dementia Diary: Happy ho-ho-ho

The Dementia Diary: Happy ho-ho-ho: Today on this eve, I would like to wish everyone a very, very MERRY CHRISTMAS.  The support and prayers and encouragement for me and mom has...

Happy ho-ho-ho

Today on this eve, I would like to wish everyone a very, very MERRY CHRISTMAS.  The support and prayers and encouragement for me and mom has been the best gift ever.  Thank you.

The Dementia Diary: Come and get it !!!!

The Dementia Diary: Come and get it !!!!: The majority of the time I spend with mom is centred around meal times.  Many people have messaged me wondering why the meal time is so impo...

Come and get it !!!!

The majority of the time I spend with mom is centred around meal times.  Many people have messaged me wondering why the meal time is so important and why is occupies roughly 3 hours of my day.  There are many reasons but mainly because is takes roughly an hour to feed mom. 
Most people with advanced dementia have difficulties eating and drinking, this too is for many reasons.  Some patients don't recognise the food in front of them, especially if it is minced or pureed as is often the case and this is the case with mom.  Now that she is more alert I am feeding her the minced food again as well as fortified liquid.  Mom insists that everything put in front of her is fish or if the vegetable is green, then it's cooked spinach and mom hates both, needless to say, she won't eat them.  Some patients will eat the condiments on the table or sugar packs or even take a bite of their napkin and again this is because the dementia has taken away that part of the brain that identifies what is food and what isn't.
Depression can also play a role in eating.  Although a person may not be able to express it, they might be depressed and often a depressed person does not have an appetite.  In many, the plaque that destroys the tissue and areas of the brain has taken away the hunger response, so they simply don't feel hungry.  It's very hard to feed a person who isn't hungry at designated meal times.  This is why, in most facilities like mom's there are small kitchen areas where sandwiches, cookies, fruit, yogurt and beverages are always available.
There can also be the opposite changes in dementia patients.  Some of them will crave sweets and only eat sweet foods or they will eat only certain foods.  My mom seems to only want to eat soup, mashed potatoes and dessert, but she always liked dessert.  Other patients literally forget that they already have a mouthful of food but with continue to take bite after bite after bite without swallowing so of course this puts them at risk for choking.  Other patients completely forget to swallow and they also pose a risk for choking.  With mom, she will chew and chew and chew and chew and not swallow unless she is encouraged to take a drink of water.  When she does try to swallow, instead of pushing the bolus of food to the back of her mouth she pushes it to the front of her mouth and out all over her chin.  We have a system.  I give her a bite of food, watch her chew about 10 to 12 times and then I either encourage her to take a drink (she can lift the cups to her mouth now) or if she is too shaky,  I give her a drink and the food is properly swallowed.
Patients like mom also have a tendency of pocketing food.  Instead of swallowing they move the food towards their cheeks and it sits there, not swallowed like a chipmunk.   Mom occasionally does this so I always check her mouth after every meal.  This isn't an intention behaviour, it's another symptom.  Pocketing not only can cause choking but it can also cause aspiration pneumonia as over time little particles of food will be inhaled.  Pneumonia is one of the major causes of death in dementia patients, so the pocketing of food has to always be checked.
Of course any dementia patient who has Parkinson like symptoms has difficulty eating.  They simply can't control the shaking or the muscles in their hands.  Lately, I have been trying to encourage mom to hold a spoon and get a bite of food and then eat it.  Sometimes she tries and can do it but then a minute later instead of putting the food in her mouth she will put it into her cup of water.  Other times, she is just to shaky to hold a utensil.  
As dementia progresses the muscles become rigid.  This applies to all muscles, including those in the jaw and the throat.  A few months ago we were starting to see this in mom but the muscles have gotten some strength back again and her swallowing is much better.  Her swallowing is so much better now, we no longer need to use the straws to drink liquids.  When the muscles get too rigid, a dementia patient simply can't chew or swallow.   If they can't chew or swallow then they can't eat solid food.  If they can't swallow at all, they can't take in any food and unfortunately they can't take in liquid either.  People can last 3 minutes without oxygen, 3 weeks without any food but only 3 days without any water.  I watched mom's swallowing for months and will keep on watching it because when any person can no longer take water and without medical intervention, well the end is near.  Mom's personal directive is no tube feeding and this includes water.
The other reason why I feed mom is because it's time together.  As we wait for the food we will chat and often I will eat a meal while I feed mom because it gives both of us a sense of togetherness and family time.   We all grew up with our parents and we all spent time around a kitchen table or in a dining room, eating, talking, arguing or laughing and everyday I do that with mom.  It doesn't matter that we are eating in a large dining room with other people and not at home around the table or that I am feeding her.  What does matter is that it's meal time, together but I do miss the sound of my mother's voice, yelling through out the house or the neighbourhood "Come and get it!!!!'.