A Journey of No Return

My experience with my Mother and Dementia

Someof the Articles I choose to write about are very sad and in depth events thathave happened in my life.  These are events that if not talked about gounnoticed and I feel it is a Simple Reminder to everyone that a life changingevent can happen to you or someone you love and impact or change your life atany time.

My Mother in her life had to endure so much. She is a survivor of many events. These events in my opinion made her such a strong Woman of Substance who I could only ever aspire to be like.  She was my Father’s primary care giver from when he was diagnosed and who suffered with rheumatoid arthritis, always a Mother and more too all her 4 children.  She was therefor me on many of my life’s up’s and down’s and she took care of me when I left my marriage and had no place to go then a couple of weeks later I had a car accident that changed my life forever. And she took care of me.  She also taught me during the terrible period in my life that I had a choice in life to crawl into a corner and have a “pity party for one” or to get up out of my bed,go shower or wash my face, brush my hair and put of my lipstick no matter how bad I felt or how depressed I felt because in her words that would make me feel better along with a strong cup of tea with milk with lots of sugar, that is what I do to this day even on my worst days.

My Father passed away several years ago an incredible Man ofStrength and Courage a "Warrior King" who battled RheumatoidArthritis for many years.   My mother was his primary care giver foryears and she had to do literally everything for him, wash him, feed him, dresshim, all the things a dedicated wife and care giver does.  Shortly aftermy Father Passed away my Mother was diagnosed with Colon Cancer and as alwaysshe faced her challenge in life with strength and courage a true “Warrior Queen”. She had the surgery, and she took a very long time to come out of theanesthetic and was moved into intensive care for a while.  She hadeveryone concerned that she was not waking up... she did finally wake up on herown and was disconnected from the breathing machines, tubes etc but she seemedout of sorts for a longtime.  After she was well enough days later shecame home.  Days and weeks and months went by before her incision from hersurgery finally healed. Nurses were coming in on a daily basis not knowing whatto do. The specialist who operated on my Mother and the wound specialist fromthe hospital both these men went out of their way to research whatever theycould and where ever they could to get this incision site to heal. One day theycame across a dressing of Manuka honey after going to a Seminar.  Thesedressings were applied to the wound and suddenly after a few applications overa short period of time a miracle, the wound was healing and this is what didthe trick.  UMF Manuka Honey or Active Manuka Honey is used in a dressingas the antibacterial component in manuka honey is methylglyoxal (MG). MG is acompound found in most types of honey, but usually only in small quantities. InManuka honey, MG comes from the conversion of another compound dihydroxyacetonethat is found in high concentration in the nectar of Manuka flowers. MG isthought to give Manuka honey some of its antibacterial properties. Thehigher the concentration of MG, the stronger the antibiotic effect, but, theremay also be other compounds involved in the medicinal effect of Manuka honeyyou can find out a lot about this natural healer by researching on the Internetas I did.

During the time of her healing I would sit with her andsometimes just watch her as she struggled to remember what it was she wanted tosay.  My Mother was a beautiful artist and I encouraged her to paint againbut she would sit and struggle with what she wanted to paint also.  Iwould bring her books and she would put on her glasses and read and I wouldcome into her room and ask her if she was enjoying the book and she would say“I don’t know”.  On a trip to our family physician I told him about myMother’s forgetfulness and he told me it could be from the after effects of theanesthetic she had that the effects take months to come out of the system orpossibly the early start of Dementia.

A few weeks later I left my Mother with a personal caregiver whowould come to help my mum bathe and help me for half an hour every day and Iwould leave to go run to the grocery store.  Upon my return I found myMother was left unattended and on her own and I looked at her and I saw she hada big red bump forming on her forehead.  I asked her what happened and herresponse was she did not know.  I immediately took her to the emergencyroom of the hospital and there she had a scan off her head and we waitedseveral hours to see if she had any signs of concussion etc. we left as theemergency room doctor said to monitor her and watch for certain signs over thenext couple of days and that she had one nasty bump on her head.  I calledto the personal care giver to ask what happened and she told me she left my Mumalone as she knew I would be back within a few minutes as she had to leave togo to another appointment and that my Mother was fine when she left..

A few days later I got a call from my Mothers Oncologist whotold me to come and see him as soon as I could as he got a report of the scanas he was a doctor on the report list….so I went to see him and was so surprisedas what the scan reveled and that was that my Mum showed the definite signs ofa front lobe Dementia and if the scan had not been done we would none of ushave been any the wiser.  I found myself feeling devastated as she hadgone through so much in her life and now this…I knew from reading and educatingmyself what Dementia and Alzheimer’s was all about and what a cruel lifejourney this was going to be for my Mum from now on.

My Mum slowly started to forget more as the months went by…Shestarted to have no concept of day or night and would sleep during most of theday and then she would start to get up, get dressed and want to go shopping orgo for a walk outside around 9pm or later. It got to the point I had tohave the alarm set from inside the house 24hours a day.  One night I awoketo hear a crash of glass and ran to her room…she had knocked over a glass ofwater,  her bedside lamp  was knocked over and that had broken the lightbulb at the base, the lamp was still plugged into the main power and she wasjust about to put her fingers into the electrical section where the bulb hadsmashed and I screamed for her to put it down….several times I got up in themiddle of the night to hear pots and pans clunking away in the kitchen and gotup to find her with all the elements going on the stove, nothing in the pansbut boiling water and when I would ask her what she was doing well she haddinner to cook for our entire family at 1am in the morning.  And so thiswent on and she started to forget more and more and get lost in what is referredto as in the moment…..I could talk to her about things in the past and shewould remember but if I asked her what she watched on TV a couple of hoursbefore she did not know, I asked  if anyone had called and she would sayno one called but they had…I think the worst time I remember though is herwaking up in the middle of the night, she was so afraid and told me to ask themto leave, and when I asked who she said the soldiers the men who were in thehouse…I calmed her down and I realized that she was thinking about the timewhen she was a child in Eastern Europe and taken in the middle of the night bySoldiers… You see my Mother and her family at that time in her life weresurvivors of horrendous massacres of Polish people and others in Volhynia andEastern Galicia a region in Poland during the second world war an area thatRussia and the Ukraine were fighting over and a terrible event where manyPolish men, women and children were massacred but this is another article foranother time that I am in the process of writing.

I carried on taking care of my Mum for a long time thinking Iwas super woman and I could do this job, taking her back and forth to doctors,specialists, emergency rooms, cooking, cleaning, shopping, until one day Istarted to not feel well myself and ended up in the emergency room where I wasdiagnosed with a super bug that most likely I had picked up from the hospitalon one of my visits with my Mother.  I got over that and it left me withvery little energy and I had my own chronic pain issues to deal with as well…Icarried on caring for her for another few months and then got another dose ofthe super bug again most probably from the hospital or an appointment with myMother that whipped me out to the point I spent weeks in the hospital in verybad shape.  Before I was released from the hospital the doctors told me Iwas not strong enough with my health to care for my Mother and Myself and thatmy mother was in need of more care than I could possible give her and I had nochoice but to place her into a home as she needed round the clock care andsupervision.  I was devastated and angry, I was so angry at myself that Ihad failed her and this feeling of failure stayed with me for a very, very longtime.

I have to tell anyone reading this or anyone who has beenthrough this knows it is one of the hardest decisions you will ever have toface in your life.  Today nearly four years later my Mum is still here butnot here….she remembers me, who I am but she always tells me every time I visither that I need a good face cream because I have bad wrinkles and I tell her itis ok to have wrinkles over 60 and she looks at me and always says “You are not60 and I answer yes I am 61 now and she looks at me and always answers if your61 then how old am I?”  She is somewhere in a much younger time, to her Iam a much younger girl and I am glad in a way but sad at the same time knowingthat she will regress I just pray she does not have memories of a time when shewas younger when the second world war broke out and she and her family weretaken prisoners of war by the Russians and her very sad journey during thattime as she went through a lot as a child and her losses unimaginable as werethe losses of all those people during that period in time….

Dementia is a very cruel part of life for so many people andtheir families. In fact it is an epidemic in these times we live in. It takesaway so much joy and brings so much sadness.  It is so very important tohave a conversation of any type with your parent or loved one who is goingthrough it as they still need that verbal and mental stimulation. Hugthem, kiss them and love them just the same as you did before.  Here inOntario where I live in my humble opinion and from what I have seen andwitnessed the system does fail these people, families have to get moreinvolved. You cannot just drop off a family member and leave them in ahome and not go visit and pick up the phone and call them.  You have tostay on top of their needs, medical and other.  The homes are understaffedas far as nursing care.  The nurses do not have the time to spend one onone with the patients left in their care.  Government cut backs areridiculous as the population with Dementia is only growing higher at a staggeringrate. The need for more stimulating programs is needed in the homes andpatients should not be left in their rooms all day long with no interactionexcept at meals times and when they are given medications.  Yes it is thepatients decision if they want to participate but when you know a patientcannot make a good decision is it the right thing to leave them alone all thetime? I think not and I see this practice taking place with my own Mother inthe home where she is and with the other residents when the programs staff comeand ask if they want to join in on an activity.  I see also at the homewhere my Mother is that there is a shortage of volunteers and I have alsomyself volunteered my time at other homes. This shortage of Volunteers is aproblem when people become selfish with their time and cannot give up an hourof their time a week or on a weekend to perhaps share a talent and help out inthe community.

I do not think for a minute that people with Dementia do notknow your there….My Mum has a sense of when I am walking down the corridor shetells me she knows the sound of my footsteps, who knows maybe she doesremember….she always gets up with a big smile, we hug but she has no idea ofthe last time we saw one another, she thinks we still live together mosttimes.  If I take her away from her lunch routine and have lunch in aseparate area than where she usually has lunch she thinks we are having lunchat a restaurant and always asks if we have to leave a tip. If I take heroutside into the garden at the home with another one of the residents on a nicewarm day she as well as her friend thinks we are out in a park somewhere. Her attention span is not long anymore and it is very hard to have aconversation sometimes at all, there are days she asks me to leave when I havebeen there only 5 minutes as she is tired and wants to sleep after all hermorning meds, I understand but I bring a book or some art and I just sit in achair quiet and wait till it is her next meal time or coffee break and then Ileave…This weekend I walked away with a heavy heart as I wrapped my arms aroundher, kissed her and told her how much I loved her and she began to cry, sob infact and when I asked her why she said “I did not know” …..

If you have a parent or a loved one who you think is acting outof sorts then take the initiative and ask your family doctor to check them out,a geriatric doctor also will run a simple test.  Get yourself help if youchoose to be the caregiver knock on as many doors as you need as there is alittle more help now within the communities but not much than when I neededit.  Get in touch with your local Alzheimer’s society they have lots ofinformation about Dementia and Alzheimer’s to share with you take a course likeI did find out what goes on with people with Dementia educate yourself as thisis not an illness that goes away it just gets worse and does not getbetter.  If you choose to be the Caregiver know that you need to take careof yourself.  Eat right, whenever someone comes take advantage of thattime, get out of the house and go for a walk, do something for yourself or ifyou are tired go and take a nap as your energy levels decline so fast if theyare not replenished. If there is an organization within your community ora government sponsored organization that will give you respite time takeadvantage of that also as you need to take a break every once in a while I knowmyself that the respite times are what saved me I was able to go somewhere overnight once in a while and just be with my own thoughts and just breath for24hours. 

In finishing this article I just want say a big thank you to allthose people who work and volunteer out of a CONVICTION to care and help inthese homes that most of our ailing and aging population ends up going to.

Love and Light to Everyone