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I have one semester left before I graduate with my MSW. It has been quite the journey and one that I will not forget. I almost didn't start, I remember feeling so scared and worried about my parents, especially my Dad who was in the hospital at the time and who had recently been diagnosed with the dementia. It is so hard to believe that almost 29 months ago, I thought I would lose my Dad to dementia and not to cancer. So much has happened.

So one of the last components of my MSW is a field placement of 400 hours that can be done clinically or within the education field if one is lucky enough to find such a placement. I decided I didn't want to do clinical work so I met with our local university last week after they agreed to take me on as an MSW student. Imagine my total utter surprise when they told me about a research project that is currently in the works for the university - a feasibility study on housing for people with dementia and alzheimers and they asked if I was interested. I almost jumped out of the chair with excitement as I have focused so much of my graduate work in this area. So it looks like I might be spending three months doing further research in this area and I will be able to use both my personal and academic experiences and papers in such a worthy cause. That universe! I would be so happy to continue this work for the many people I have met and grown to love who also have alzheimer/dementia. My life changed so much since my Dad was diagnosed with dementia and then died of cancer...

A picture of me contemplating my life in late August on a hike to Lake Superior Park. Little did I know then how much my life was going to change...

Thank you

Closing up soon and a HUGE THANKS!

I can't say enough 'thank you's' to everyone who has supported me throughout the life of this blog. I have made some wonderful friends and I hope that the end of my blog does not mean the end of our friendships. Please leave your email if you still want to hear from me and so that I can let you know when I start my new blog - probably one on art therapy and healing sometime in the next year! So let me know. I will keep the site up for a while but then I am shutting it down.

I have treasured every comment and felt every prayer. I have listened to all your words of encouragement and support and held them close to my heart. I couldn't have done it without you and even though my blog didn't have a huge following, I am eternally grateful to all of you for hearing me. I have had over 10,000 hits on this blog and that in itself amazes me! However, what surprised me the most was how healing a blog can be and how it can connect someone to human kind. This was a wonderful space to write about the perils of having a Father with dementia and one who also became quite abusive at times and yet could be so loving at other times. It was wonderful to know that I was not alone - no one wants to talk about abuse and dementia. Thanks for making me not feel so alone in this crazy world.

I decided to close this blog down because I need to move on in my life. I will grieve the death of Dad for a long time and perhaps it is time to do that grieving in a less public way. I also have some wonderful things happening in my life with my daughter getting married in the summer. I am looking forward to a fabulous Greek wedding. My girl already told me that her grampy's photo and a candle will be at the wedding to honour those who could not be there. There also appears to be some drama from the other side of the family around the wedding and I am hoping that it all works out. There were even accusations that my Dad threatened to use the belt or used the belt on his grandkids when they were little from bio-Dad's side of the family which alarms me and scares me because it is utterly untrue.  But anyway, other then that drama, which I hope gets sorted out soon as my daughters are quite angry, the wedding is in full swing and my daughters and I are having a blast on a private family blog that we are using to keep updated with each other and plan the wedding.  So, as you can see, still things to work out, but it will happen.

So, Sweet man and I are going off into the sunset. I will be getting my MSW in April 2012 as things are still going as planned - a few diversions and several crisis that have made some road blocks, but I am still heading that way. I hope to open my own private practice in the next year or two and Sweet man is retiring and running the home front. I hope to have little grandbabies running around here in a few years and who knows, I may even write another book. (My first book was an empowerment book for women, focused on abuse in relationships, was local and sold 3000 copies). So who knows what the future holds for me? Dementia certainly changed the course of my life and cancer took so much away but I am always open and ready to learning more about myself and growing as a person.  I have learned to live in the moment and to focus on the good things, and to have gratitude for what I have, and I have learned that love, in its purest form, will come through in the end, just as it did for Dad and I. I will miss you all immensely. My life has changed so much since I started this blog on dementia...

I need courage

I still can't bring myself to viewing the container that holds Dad's ashes. I know I have to do it at some point but it seems so overwhelming. The box we chose for Dad is made of mahogany wood and has the Royal Canadian Air Force emblem on the front. I am told that it is very beautiful. I know Dad would have loved it and I am sure that wherever he is right now, he is proud that we chose this beautiful box as his final resting place. However, I need to somehow get the courage from within to view this box, which has been at Mom's place for over three weeks.

Dad's dog tags also await me. It is an honour to be chosen to be the recipient of them, but again I haven't been able to bring myself to the point of actually picking them up. We put his tags on him for the last time at the funeral home and we left part of them with him when he was cremated. I am getting the other part of the dog tag along with the chain. In case you are wondering, dog tags are made for military personnel as a way to identify wounded and deceased soldiers of war. A soldier was supposed to wear them at all times. They are very personal as Dad's name, rank, social insurance number, blood type and religion are engraved on the metal. They have been a part of him since he joined the Royal Canadian Air Force when he was seventeen years old. While they would have no value to anyone other then someone who knew him, they are extremely valuable to me.  

As each day passes, I come closer to moving out of denial and more into reality. Viewing his box of ashes and holding his dog tags will bring more reality into my life. I just need to find the courage. My life has changed so much now that Dad has moved on to the next part of his journey...

Grief is grief is grief...

Its been three weeks since he died - I am slowly moving out of numbness. This Friday we meet with the funeral home for our wrap up meeting and then in the spring we are having Dad's ashes interned at the mausoleum. I am still trying to wrap my head around all of it but it is getting better and I don't think of it as much as I had been. The more time from it, the more reality sinks in.

However, we are all still in pain. A few weeks ago, I remember thinking and telling Mom that she was in more pain then I was because she lost her husband, her life partner and I had only lost my Dad. How I figured that my emotional pain was any less important or less painful is a mystery to me, but its what I did. Then it occurred to me that there is no hierarchy of pain and grief - we all feel it. As a social worker, I do a lot of groups and individual therapy and I always tell women not to compare their pain to others because it minimizes where they are in their healing. I mean really - emotional pain is deep and difficult and I don't for the life of me know why I was trying to minimize my pain compared to Mom's pain. I certainly wasn't practicing what I preach! I had to face it - we are all in this together. We may have had different relationships and different feelings but we are all hurting. Some of us may live further away and have had a long distance relationships with Dad, but we all feel the pain.

I remember many years ago when Mom's good friend's Mother died. She was a dear old lady who almost reached one hundred and we all loved her. She lived with her daughter for a few decades and she was as sharp as a tack - no dementia/Alzheimer's diseases there! One day she fell and hit her head and within a few weeks she died. A few months after her death, her daughter was still mourning very deeply. I remember Mom getting angry with her friend and telling me that since both of Mom's parents had died tragically when Mom was seventeen,  that her friend had no right to be grieving so much. She felt her friend should be happy that she had her Mom so long in her life compared to what Mom had. I remember getting upset with Mom and telling her there was another way to look at it too - that since her friend had her Mom for so much longer in her life, that she may have had more to mourn and that Mom's friend was entitled to all of her feelings. I shared with Mom that Mom's feelings of anger came from her own grief and loss - I can't even imagine what that would have felt like to lose both of your parents in your formidable years. I think Mom heard me on that one and she never said anything again and she continued to support her friend through her loss. In fact, now this friend is one of Mom's best supports right now. So grief is grief is grief...

I have thought a lot about this and I decided I wasn't going to minimize my grief anymore or compare it to anyone else. We are all hurting - my children have lost the only Grandfather they ever knew, my siblings and I have lost our Dad, my Mom has lost her life partner and it goes on. So I am going to own my grief, allow it to move through me without guilt or comparison to anyone else and I am going to continue on my healing journey. I starting doing a little art work on the loss of my Dad on the weekend and later this week I am getting a Thai massage to help move the grief through my body. I am not just going to intellectualize this pain it or stuff it - I am going to move it along so that I can get to the point of feeling comfort in knowing that my Dad will always be with me - not on this physical plane but in another realm. Grief is hard work and painful but I know that if we move through it, that over time, we do heal.

My life has changed so much since my Dad died....

Denial - I am planted firmly here...

I still can't believe he is gone. I have had many people in my life pass on - friends, grandparents, aunts, uncles and cousins but I have never had the experience where I didn't believe the person had passed away. While I feel overwhelmingly sad on some days, there is still a big part of me that doesn't believe Dad has passed on in his journey. It's not like there is a place that I can go and see an empty chair or room - his bed was quickly filled in the nursing home. Mom's apartment is hers - after she left the home they shared when he went into the nursing home, she made it 'her place'. I have nothing that tells me Dad is gone other then my heart. I haven't even  looked at the box with his ashes in it - I am still in denial. Where are you Dad? They say you are gone but I don't want to believe it. My heart tells me you are gone but my head tells me you are still in your room at the nursing home and that I get to visit you there soon!

Today is the day that I used to visit Dad for the afternoon. I think it will hit me today in about two hours that he is gone when I don't get into my car with the goodies I had found or bought for Dad during the week; when I don't pick up some new flowers after a chat with the owner of the flower store about how Dad is; when I don't go and get double double Tim's coffee that he liked; and when I don't  head to the nursing home. I won't be hearing or seeing the excitement that Dad expressed when he saw me coming in on many of the visits. I won't be laughing with Dad about something silly and I won't be giving him the kisses and snuggling on the back of his neck like he let me do to him after he went into the nursing home.  No, that won't happen today. None of it will. Dad is not here anymore and it will never happen again.

So perhaps today is the day that the wall of denial will tumble down or perhaps not. I will just gently get through whatever happens today...

Home

One of the issues we really struggled with was where Dad should go after the diagnosis of terminal cancer. While at times he would vocalize that he would want to get out of the nursing home, he in fact was happiest there. He loved the staff there and they in turn loved him back. Many of the staff called him "Donnie" which was a childhood name that he abhorred but he didn't mind it all in the home. In fact, I witnessed many of the staff tenderly come into the room in the last week of his life and say goodbye to "Donnie".  They knew him very well, what he liked, what he didn't like and how to handle his temper. Most of all, they loved him dearly.

I know one of my sisters thought he should go to Palliative care - either a palliative institution or in the hospital in the palliative unit. However, she wasn't at the nursing home very often so she really wasn't aware of how much Dad liked it there. It became a bit of a struggle in the last weeks of his life as to where Dad should be but thankfully Mom was firm in the belief that Dad needed to die in his 'home'.

We knew Dad thought of Tendercare as his 'home' after his final trip to see the Oncologist four hours away. On the drive back home, all Dad wanted was "Tendercare". He didn't believe me that I was bringing him back to the nursing home and at one point, he asked me if I was bringing him to Montreal, which would have been the opposite of where we were headed. I tried to point out the signs that showed where we were going, but he kept yelling "bullshit" and it was the longest four hours of my life as he continued to ask for his bed at Tendercare. When we finally got back to the home, Dad was acting so out of sorts that I asked the staff to come and get him out of my car. As soon as they wheeled him to the entrance of his room, he laid his head back and smiled ear to ear. There were about six staff touching him and soothing him and he was just so blissfully happy to be back at his home. It was in those moments that both Mom and I knew that the nursing home would be where he stayed as he went through the last weeks of his journey. I also wanted Dad's input into this decision and while alone with him a few weeks before he died, I asked him where he wanted to be when he died. I explained to him that we could move him into a palliative care institution but he said he wanted to stay at Tendercare.

While we tried to explain why were keeping Dad in his 'home' to my sister, it was difficult because she wanted the best for Dad. In her eyes, palliative care outside of the nursing home was the best for Dad while Mom and I believed that the nursing home was where he should be. I don't think my sister ever came to terms with how much Dad loved the nursing home and she didn't understand, even in the end, why the best place for him was his home. I know she wanted what was best for Dad and it wasn't malicious or anything like that. It did create tension though, something that made Dad's parting journey a little more difficult for Mom and I. It was something I wasn't prepared for either as my sister had never taken an active part in Dad's care. While I was appreciative that she wanted to be part of his care at the end of his life, I was surprised at her resistance to the decisions made but I know it was all out of love for Dad.

In the end, we knew we had made the right decision. Dad was lovingly cared for and while the staff wasn't always up to par on palliative care, they worked their hardest to make sure Dad's dying days were pain free and peaceful. At times we had to advocate for more pain medications and at times we got angry, but in the end I know Dad was  happy that we didn't move him and left him in a place where he was loved and cared for so tenderly. I knew it was true caring because the staff would even come in during their days off or call the home just to see how Dad was doing. We even had one former staff member come in to see Dad and say goodbye. In my eyes, the home is called 'tender care' for a reason!

Of course I really miss Dad, but I also really miss the staff and residents of the home now that I have been away from them all for seventeen very long days. I never knew how much my life would change when my Dad got dementia and moved into a nursing home...