All rightee then, let’s get a crack-a-lacking with my response to Colleen’s questions:

A few things that I find most demanding in no particular order:

• Not knowing how much time we have with my father before Alzheimer’s steals him completely away from us.  There are moments when Dad seems so normal & so like his old self that it’s easy to think that he isn’t ready for a personal care home.
• Not knowing how Dad will fair when he gets placement in a personal care home. Dad was paneled in February, 2012 but there is presently a freeze in accepting new applicants unless they are from a hospital environment & have no other means of caregiving support at home.  Being accustom to an Asian diet, how will he adjust to a new western diet? How will he cope without being able to see his family daily? In essence, will moving my dad from a familiar home environment where he is cared for by family hasten his deterioration from Alzheimer’s disease? Am I signing his death warrant by initiating the process of placing him in a personal care home?
• Being absolutely fearful that there is the chance (no matter how infinitesimal) that my father won’t be cared for with dignity & respect in a personal care home.
• My mother’s waffling between throwing up both her hands & exclaiming she can’t care for my dad any longer as she is getting old herself and then reverting back to saying it’s over her dead body that anyone is going to place my dad in a nursing home. This flip-flopping can happen within days & on occasions, within hours of each other. This ambivalence makes my father dig in his heals over going into a personal care home. It is a vicious cycle.
• My older sibling’s emotional inability to deal with caregiving for my parents. Things have gotten a lot better after some very candid conversations with them but there’s room for improvement. I often feel that I have to be on top of everything & make all the tough decisions even though I am the youngest. Case & point, the eldest (who works in a pharmacy by the way) couldn’t resolve an error in my dad’s prescription for weeks and decided it was a good idea to hand me her cell phone so that I could speak to my dad’s doctor to “fix things” when I was in emergency (I was hospitalized a few months back due to a sudden onset of a serious illness, no worries I’ve bounced back since then…still alive & kicking).  When I did return from my four-day hospital stay, the fridge & pantry were empty and the laundry was over flowing.  Did I mention that I & my siblings all live in the same house with my parents so that Mom & Dad could remain in their home as long as possible? There were two able bodied people in the house so there wasn’t really a reason for chaos to ensue while I was gone for a short period.  By the way, things are not as bad when I have business travel since I can plan in advance and provide both my older siblings with to-do lists. 
• My parents are much older than most of the parents of my peers and as such, I have been caring for them since my late teens (I am now in my forties). I have nursed my parents through bouts of cancer & surgeries, injuries due to a serious a car accident to more run-of-the-mill knee replacement surgeries & medical conditions that are common due to old age. Although I don’t regret for one moment caring for my parents, as they have done everything in their power to ensure that their children have better opportunities than they ever did, I do sometimes feel like I am sitting on the sidelines when my friends reach certain milestones in their life like buying their first home, getting married, having children etc..  I do realize that I wouldn’t be able to care for my parents in the same way if I did have my own family but there is always the nagging question of “when is it my turn?” as selfish as that sounds. 
• Although I count myself lucky to have my mom & older siblings around to form the support group that cares for my father, it is difficult for everyone to not feel that the house is overcrowded and that we all need a space to call our own. My elder sister had the opportunity to live on her own for a little over 20 years before moving back home a little over a year ago to help care for my parents but my older brother & I have never had the opportunity to be on our own. 
• Feeling guilty about wanting to have life of my own.
• The financial strain of caring for elderly parent.
• Lack of sleep & fatigue.

• As much as it pains me to say it, exercise. I don’t mind exercising once I get started but let’s face it, I would rather sleep, read a book, eat a cookie, surf the internet, eat a cookie…oh wait…did I already say that? JExercise does help me blow off steam & I must confess I can cope with things in a much more calm & rational manner.
• I love food so eating well & of course throwing in not-so-good-for-you treats every now & then (like eating a cookie). 
• Attending educational seminars for caregivers.
• Delegating tasks and accepting help. I have learned over the years that if I jump to the rescue all the time when tasks are left undone or not done as they should-have-been, I will drop from exhaustion. Unless, the situation involves fire, flood or excessive bleeding, I will let those who are responsible for the delegated task(s) the opportunity to “fix it” themselves.
• Requesting & being granted a few hours of home & respite care to relieve my mother of caregiving duties while my siblings & I are at work lessens the burden for everyone.
• Booking time off to get a massage, manicure or just to spend a few hours with friends. 
• The saving grace that allows me to feel that my life isn’t completely passing me by is my career. I am extremely lucky to have a work environment, managers & co-workers that are very understanding, supportive & accommodating of my caregiving obligations.  I am extremely grateful as not every caregiver can say they have the same luxury. I think of Mark99 unselfishly closing his business in order to be a fulltime caregiver to his wife. I also think of Pudding having to work part-time in order to care for her mother.
• Although I do have many moments of guilt & self-doubt, I know logically that I am doing what is best for my father, the rest of my family & me as well by getting my dad paneled for a personal care home. I tell myself that we want to be prepared and have options open to us instead of having everyone reaching their breaking point & not having the capacity to care for my dad in the manner that he deserves to be cared for.
• Being able to see the humor & laugh.

Cheers,

Missy: Thank you for the birthday remembrance. It was okay took a baking class at http://milkbarstore.com/ with a new friend. But I must say that even though I have passed through the most difficult part of my grief replete emotional pain and hurt there is a new wave. I find myself in the quite time at home wondering what was lost and the ache in the gut. But I am working on a short documentary regarding my experience with palliation and hospice. I hope to share the site for the film etc.

You comments regarding caregiving both the difficult and the blessings are touching in their completeness. They read like a primer on caregiving for all of us to read and reflect on. The difficulty you feel is what we’ve all felt. At the same time it was for me my deep diving into the love I had for Donna and what I wanted to give to her since she handed her disease to me so she could relax and live during the time she had. I close my eyes and see her brave and strong while getting a Thoracentesis. That was just a week before hospice. I miss her and miss caring for her but I know in the middle of it I was not a happy camper but it was my small gift to her knowing this too shall pass. 

There are moments in this grieving process and healing you face something so painful that you recoil in horror at all your hard work and question the reality of the memory you’ve built.

I’ve been trying to meet people and get out from under my shelf though I am not suffering from being alone. Loneliness is not the predominant emotion in my life. If anything I would say the difficulty I face is trying to find my place in the world both professionally and personally, to do something with my life and be something or someone to others. So this weekend I had a small dinner party for a friend and her husband as well as someone I’ve been dating. The dating thing is not all that serious on my part. As my friend said to me today she can see I am not into her but she is into me. But what can be said is I am trying. So far so good but I still miss Donna.

During this conversation the fact that Donna and I were sometimes difficult to be around. In fact it is more to the point she had a very strong personality and was not universally loved. I loved her and saw her truth. But to hear someone say her husband who I like and is a sweet sweet guy tell her that while Donna was alive he didn’t want to be around her or me. This makes me wonder in all the grieving I have been doing and trying to, I guess, rehab Donna’s image is just that not real but a public relations argument. I doubt my motivation and myself and am angry with myself for loving Donna. Not sure that last statement is valid. I was there I cared and tried to make her life better in the face of her knowing her death was coming. Don’t know if this post is about me or Donna or what the hell it is all I know is that I am devastated and don't want to face another day.

Sorry to sound like a looser.