It has almost been 3 months since you left us.  Your smile, your laugh, and that twinkle in your eyes.  During the last couple of years you may not have been able to verbalize with us what you were feeling but you always showed that you loved us.  When we entered the final days and the medication was gone it surprised us at how well you could communicate with us.  When we spoke to you and talked about good times we had shared you would squeeze our hand, reach up to give a kiss, and in some moments even speak coherently, which was miraculous.  Even in your last day you spared us seeing you cross over but you did let us know.  (Dad had held a small glass angel in his hand which would light up, this was one of the last objects he held.  We took this angel home with us when we left the nursing home for dinner.  As I was explaining to my children the importance of the glass angel and trying to show them how it worked the light would not flicker.  The phone rang and we received the call that Dad had passed, so we returned back to the nursing home. Later that night when we came home I went to the glass angel and miraculously the light worked.  I took this as a sign that you crossed over peacefully and you were letting us know.)  Since then we have experienced your presence with this angel and it brings a smile and happiness to us knowing you are near. 
I miss you soooo much, words cannot describe.  I speak and advocate daily for this disease, and I know you would be proud. 
We are now heading into the next chapter of our lifes, with 3 parents gone and one remaining (who by the way has a mental illness and has been diagnosed with a couple of  different forms of dementia due to his lifestyle, this is a whole other story that I will write later), we find that the losses we have had, have created huge voids and time on our hands.  We now focus our time on our children, our marriage and in helping others.  

I can only hope that one day they find a cure for dementia.

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I feel really bad for not keeping up "My story" and not being more pro-active on this site.  I sometimes feel terribly disorganized and unable to keep up with things. Tonight I'm working on my parents' expenses from October... Bookkeeping is rarely anyone's favourite task, but it must be done. Especially as money is owed to me, and my December credit card statements are pretty hefty.

Having said that, my father is doing really well. He's at a good weight, his team of caregivers is stable, we've established a more comprehensive routine for him. One of my brothers was in town in October and took a few video clips, something he does whenever he comes (usually once a year). I would like to post a "compilation" here. No promises as to when I'll get that done, but it's something I want to do if only to be able to send the video to his caregivers who have moved away. While we find it hard to accept my father as he is today, the video clips help us see how he was and how he has changed over the years. In other words, today is the best he'll be ... so we have to cherish that.

Be strong, be patient, and know that whatever you do is better than doing nothing at all.

:-)

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My mom is coming to live in our home for 10 days at Christmas and I need some coping strategies.  I believe  she will ask to go "home" about three hours after she arrives and won't stop asking.  ideas please?      

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It is with a heavy heart that I say goodbye to a great man.  Today my Father in law passed away peacefully in his sleep.  He is now at peace from this horrible disease.  Love you Papa with all my heart.

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We got the call last evening that Dad (my father in law) may not make it through the night.  They started palliative care about a week ago and he has been deteriorating slowly each day.  To our amaze he is still hanging on with each breathe he takes.

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Oct 11, 2011

Just when I thought we might be making headway, we went backwards.  Oct 11th my Dad was suppose to go to an outpatient program that would help him deal with all of the life changes he recently has had to deal with.  When I enter his room at the retirement home I knew right away that we would not be going to the outpatient program but instead going to the emergency room and having him admitted.  His behaviour was...let's just say scary.  My sister and I take him to emergency and 8 hours later he is admitted into the psychiatric ward.  Now, this is not unusual and I expected this since with an illness like bipolar, alcoholism and now dementia, it was only a matter of time that he would require more help than a regular GP could give him.  Dad has had a history of mental breakdowns (3 in my life time) so I recognized the signs and knew this is where they would admit him.  With all the environmental changes in his life recently even a "sane" person may break down.  

Oct 17th, 2011

My Dad is still in the psychiatric ward, he is improving somewhat in the sense he is now taking his medications and eating. The mental illness part is hard to distinguish since we are not dealing with just one illness but three.  So until they can get the bipolar level they cannot even start treatment on the other issues.

Now this day is memorable since it is on this date that my husband and I are not at the hospital visiting my Dad but having my Father in law brought in for an assessment.  So the geriatric specialist examines my father in law and within his 5-10 examination and consultation with the GP from the long term care home he is admitting him to the geriatric ward for further examination.  Interesting!!!  So we head up to the geriatric ward, where it is not a locked unit, has medical trays with medication and sharp objects in the hallway, and his private room has medical equipment, push pins in the bulletin board, and various other foreign objects.  Remember my father in law is 86 years old, in the later stages of Alzheimers, and has been in a long term care facility for 4 years now going on year 5.  He wanders, he does not eat with utensils but fingers (therefore finger food, not what the hospital offers) and he is use to being in a safe environment where he cannot wander out into the street; where there are hand rails should he require them; and where there are staff to monitor him and help him should he need them.  So we inform the hospital staff of his condition and stage of illness and tell them that we are not happy about this decision by the specialist and we leave.  Yes....we left for one hour, crazy as it might seem.  On our return, my father in law is in his room with security outside his door.  He had taken part of the hospital bed apart, he had wandered into other patients rooms, when redirected he lashed out at a nurse, and he picked up sharp objects all within one hour.  So we asked if you cannot care for him for one hour and he is suppose to be assessed and the specialist is now suggesting to drug him, how is this in his best interest?  Result....discharged and sent back to the long term care home, an environment that he is use to with someone to shadow him, and the specialist to take him on as an outpatient and assess him, with the help of the GP who visits the home 2-3 times a week.   

Seriously, I'm not a doctor and have no medical background, but I had enough common sense to know that this environment was NOT what my father in law needed.  Unfortunately we have a health care system that is not equip to deal with some behaviours or situations, and this is just the beginning of a wave or storm that is not only hitting Canada but the world at large.

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When I first started blogging on this site I spoke about my Father in law who I also call Dad.  He was diagnosed with Alzheimers.  Since then my Mother in law passed away in Nov 2010 which I also blogged about.  Then recently my Father has been diagnosed with Dementia.  Just when I thought life was returning to some kind of normalcy and that I could focus on my career, my life is entering a different direction. 
My Father in law is now in another stage of the disease.  He has become aggressive which is totally out of character for him.  At first they thought maybe he had a UT infection, but that test came back negative, then they tried changing up the meds, but that wasn't working and only resulted in more meds that would settle him or make him drowsy.  Now they are bringing in a team to observe him and see what triggers this behaviour.  Our visits with my Father in law are not too bad.  We seem to miss the aggressive behaviour, but I have been called in when it has happened and by the time I get to the home he has been sedated.  It is hard to watch someone you love change into someone else.  This disease is horrible to watch, just horrible.

It is almost a year since my mother in law passed away, we just listed her home.  Hoping for a quick sale.  It is very emotional walking in and packing up her life.  The memories are so vivid and we will always have them.  I miss her dearly.

My Dad is having a hard time adjusting to all the changes in his life.  He is obsessing over the amount of medication he is now taking.  Doesn't understand why he feels the way he does, and blames the medication.  I am hoping once he gets his hearing aid this week that I will be able to communicate better with him and help him understand what is happening, also I am hoping he will begin to socialize with the other residents.  He needs a distraction, so hopefully when he can hear better he will have other things to focus on.  The financial burden is also taking a toll, especially since I have not been actively working for two months, which when you are self employed is not good for business.  Thankfully, I have a very understanding husband who tells me not to worry and to focus on what needs my attention and that is family right now.

I have been contacted by the Alzheimer society of Ontario to become a Dementia Champion for the upcoming election and then I was also asked to attend their leadership forum so maybe this is where I can learn more and help make a change.  Not sure what that change will be, but I feel in my heart that someone upstairs is guiding me.

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Discharging Dad from the hospital and then introducing him to his new life in a retirement residence was one of the hardest things I have ever done in my life.  I know we did this several years ago with my Father in law when we had to put him in a long term care facility and I figured I would be okay, but this time it was my father and he was confused, difficult and angry.  Having your independence ripped away from you after one month of being hospitalized would be hard on anyone.  

I know in my heart that his new residence is where he needs to be, and he will get the care that he requires, it's just really hard.  Thanks Barrie Manor for all your support, the workers and the residents were all so welcoming.  Thanks also to my amazing family who stood beside me today and stayed strong.

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The scan showed brain shrinkage and damage to the brain due to many small strokes.  Lifestyle also played a factor as well.  August 27th Dad was due to be discharged but a relapse happen.  His medication went toxic, put on IV to flush the system.  System flushed and now dealing with delirium. 

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Had a good 4 days in Vegas (no, didn't win!!!).  I had the facility do the laundry while I was gone because my brother is undependable.  This week there seems to be more things happening with mom.  The right arm and hand are starting to contract and the massage therapist also told me she's holding her head turned to the left most of the time.  I do know she can turn her head because if there's something happening on the other side, she does turn that way. 
Hospice called yesterday about extending her breathing treatments (there's a cold going around) and replacing her Effexor with Celexa (makes no sense to me, usually things are done the other way around, but I don't think she's getting any benefit from the antidepressant anyway) because she seems to have a scared sort of look on her face.  I called back to make sure they are tapering her Effexor off VERY SLOWLY because from personal experience that drug is very hard to come off, I felt horrible when I was withdrawing from it.
I also decided I'd take a ride up there just to make sure she was okay.  I had lunch with her and I did get her to laugh a couple of times.

I casually asked some people at the NH if they'd seen my brother lately and nobody has seen him for a couple of weeks. 

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