Archive for June, 2015
My daddy (yes! I will forever call him daddy) passed away in 2005 from renal failure brought on by diabetes. For five or so years before that I was the primary caregiver to him and mom at the same time. For awhile there I tried to manage taking care of them in their home but when that blew up they had to be sent to two different nursing homes because they had different health concerns. Mom had Alzheimer’s and Dad was a diabetic.
The parental holidays of Mother’s and Father’s day were always bittersweet for me because they were both sick, in care facilities and apart from each other. My only solace was that at least mom enjoyed her chocolate I always brought her for her day – even if she hadn’t a clue as to who was feeding it to her – and Dad, while getting progressively sicker, knew who we all were and could enjoy time with us in almost the same ways as before he became ill. He could read the goofy cards we got him (we were never a family of mushy cards; it had to be fun and silly or it just wasn’t us!) and we would tie a balloon to his wheelchair for awhile until his grumbling made us take it off. But he would always proudly wear the wonderfully outrageous tee shirts I would get him as a present. It got to a point that the staff would come by to see what I brought him this time. Whenever he would wear one of those shirts the staff would smile and say to him “I see your daughter got you another shirt, Thomas.” That would make him smile; anytime something made him smile that would make me happy.
But no matter how the day would go there was still this bit of sadness because we had to drive a long way to get to his Veteran’s home and I would ultimately have to slip away from the burger bonanza (we knew we were doing wrong by his health but we always brought him burgers, fries and a malt on special days) to go talk to the nursing staff to handle business or to check on his kidney function levels. Nothing like going over the numbers on a chart that are telling me that my father’s kidneys are failing and only dialysis would help him. See, the problem with that was at the VA home they could not do dialysis and he would have to be taken so many days a week to a hospital that was an hour away for the treatment and the cost of going back and forth was sizable and not covered by insurance. Daddy put the brakes on that option by saying – and I quote – “Hell no! I am not going to go through that!”
Stubborn hard headed man but it was his choice and other than going through legal hoops I could do nothing but respect his wishes. We got into a few arguments about his treatment plans but in the end it was his body his choice and his mind was still pretty sharp so I had to let him chose to live and end his life they way he wanted to. Lord! That man was stubborn and to this day I feel that if he hadn’t been so he might have been spared some of the harshness and collateral damage (leg amputations) of the disease. Again, his choice. That is something that all of us as caregivers have to go through; doing this dance of what we think is best for the ones we are caring for vs what they want. I wish you the best if you are in the midst of this tango and really hope you never have to go through the process of legal guardianship for your loved one in order to take care of them – that can get ugly all around.
The first holidays after a death are always the hardest and to be honest they never get really easy – just not as painful. For Father’s Day I now send a wreath to his grave site and when I could I would go visit and sit on his grave and tell him all about how stupid his grandchildren were 🙂 Yes, I would sit on his grave facing his headstone and have wonderful conversations with him. We all do what works for us. When he was alive I envied others who had father’s that they would go visit at their own homes or they would post pictures on social media of the family all surrounding dear old Dad at a family gathering or restaurant. Eventually I came to terms with those things and I stopped caring about what others could do or did and was just thankful that no matter his condition I could still touch his hand, stroke his beautiful curly hair, and offer him a beer even when it became difficult for him to drink one.
Now I just feel a bit sad, shed a few tears, and miss my daddy terribly but I am happy he is with mom and is whole again. For those of you who still have your father with you I hope you have a wonderful Father’s Day with him. If you are his caregiver I hope the day is extra specially good because the rest of the days are probably rough.
Happy Father’s Day Daddy. Love and miss you.
Today, five years ago, is the day that many of us who are caregivers either dread or are happy that it has finally come. Today was the day that the battle of mom vs. Alzheimer’s came to an end. We all know who won that fight and until they find a cure Alzheimer’s will always win that fight and take with it the person we once knew but will always love. They say that when someone is ready to pass on that they either hold on until everyone they care about has come to say their goodbyes or they hold on until those who they are about to leave behind have made peace with the whole thing and are ready to let them go.
In the case of mom and dad I waffled around with letting them go or not. There were some days in fits of frustration and anger that I cried out for God to come and get them and get them now! I’m glad the almighty chose to just shake his head at me and let them live on awhile longer. Because once I got past the frustration phase of being a caregiver (well, not entirely past there were moments when I still got pretty damned bent out of shape) I found my way through and learned to live in each and every moment I still had with them. Take note of that! It is important to live in the moment with them because that is all you will have. In dad’s case because he could still talk to me up until his sudden downturn; I held on for dear life with him. With mom, because the disease had taken her away from us all years earlier I wasn’t clinging as hard.
Mom decided when she was ready to check out by slowing down her intake of nutrients until she stopped entirely. Her advanced directive stated that she was not to be tube fed nor resuscitated if her heart were to stop; you may chose differently. So when she stopped eating and drinking we all knew it was just a matter of time until her tough old broad body finally stopped working. I am very thankful for the magnificent hospice people who took care of her (and me) during this time. I don’t think I could’ve made it as well without them. They bathed her, spoke softly and kindly to her, and made sure that when her time was near that there was pain medicine for her.
I came every day that last week of her life and could do nothing more than pat her hand, kiss her forehead and tell her she was good to go; I was cool with whenever she wanted to leave. I will admit to some moments of panic when I would call the hospice folks and beg them to send someone out to sit with her at some times when I couldn’t be there. For some reason I had this fear of her dying alone without anyone there who cared about her. Not that some of the nursing home staff didn’t care it’s just…well it was this paranoia I had. As it turned out on this day one of the hospice ladies was there to bathe her when she noticed the shallow breathing and then the last little exhale. She didn’t die with me around but she didn’t die alone.
The phone rang that early morning and I knew right away what it meant before even answering it. I threw on my clothes and rushed to the nursing home where they kindly pulled the curtains around her and gave me the privacy I needed to say goodbye to her. They even brought me in a muffin and some juice; not that I had any appetite then. I touched her hand one last time and noticed it was still a bit warm and then I said goodbye and proceeded to deal with all that was needed for the next and final phase of being a caregiver to her.
Funny thing, I never really had a good cry over her. Well, maybe sometime later I did I don’t really recall. That moment when you have that soul purging cry can come at any time and not always when you expect it! As Alzheimer’s had taken what was “Mom” years and years ago, this was just her body leaving to go be with her mind. I had been grieving for 15 years by this time so I guess I was almost grieved out…almost. Losing a loved one to Alzheimers/Dementia is never easy and I would suppose that depending on the relationship (spouse, parent, child, grandparent) how one handles it and grieves varies. Just know that you can and will get through this stage of caregiving and that you will never forget and always love that person.
(I know I’ve jumped all over the place with this blog. My original intent was to stick to the timeline of my time as a caregiver but we all know how that’s turned out 😉 Will try to get back on the timeline with the next post.)