Posts Tagged hospice
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.)
This week a sweet cousin of mine passed away from complications due to Alzheimers. And while we were not a pair of almost like siblings close cousins, I did know her. Our family is the type that if you are family then you get a big hug anyway when first meeting and ultimately get invited to dinner. I knew her when she was a sharp as a tack woman who dressed well and could get to anywhere she wanted like guiding me from my hotel to our Aunts house that first time I was in her town visiting.
When I got the news some 7 or so years ago that she was on Aricept because she was at the beginning stages of Alzheimers my heart just sank. No! I exclaimed…not another family member. At the time my mother was in the end stages of the disease. The once vibrant woman was now less so and had to have one of her nieces live with her to help take care of her. At that time she could still have a conversation with you – to an extent – but only for a short time. Then she would either not really converse or do the usual for this disease repeat herself.
Eventually she had to enter a nursing home because her condition had declined to a level her niece could no longer care for her at home. She held in there for some years until she eventually stopped talking, walking and ended up on a feeding tube in hospice. This week she decided it was time to go home and while she will be missed – especially by her twin – we are all thankful that she is now free from this damn disease.
When someone dies from Alzheimers or dementia it is a mixed bag of feels. Your heart aches because this person you knew and loved, no matter what their condition was at the time, is gone. No matter how many days a week you took care of them or went to see them at a nursing home, when they are gone your emotions go every which way. In my case I was happy I never had to set foot in that nursing home again! I was happy I didn’t have to see mom suffering! I was happy I wasn’t tied to being responsible for her and all of the paperwork, etc. that was involved with taking care of someone sick who was never going to get well! I was happy that mom was free from existing (it was NOT living) like that!
But I also had this strange ache that said no matter what condition she was in she was still my mother and while she was gone years and years ago from the disease, this “shell” that was still there that resembled her and liked chocolate who I called mom, was gone. I have a feeling my cousins twin, other sister, and the rest of the family is feeling various degrees of this too.