Hi folks! I know it has been a long time since I posted here or online at all, the months flew by, and before I knew it, years of not posting accumulated. You might be wondering what happened to you... where did you go.. well in short, for those that don't know, my dad had Alzheimer's and passed away Labor Day weekend of 2024. He and our family meandered down the long, at times lonely path that is Alzheimer's, which started almost a decade before his passing. He seemed to progress more after the pandemic, not wanting to leave the house much, except when my mom forced the issue and wasn't really doing much besides sleeping all day and staring off at who knows what during his awake hours. Thirteen months before he passed, we started home hospice care, following through with his wish to remain at home if at all possible. I will say it now and always, god bless the caregivers, in this case, my mom and the hospice program in the Big Horn Basin, Wyoming. Since my dad passed almost 16 months ago, I seem to have more opportunities to share the knowledge of home hospice, what we did before home hospice, death admin after his passing; just all the things. In that effort, I have decided to sit down and write this blog post for anyone who can use it as a reference going forward. This process is never easy, and if my family and I can help you feel like you aren't doing it alone, we will have succeeded.
First, I want to start off by saying I am not a lawyer or a medical person; I am just a basic middle-aged daughter who helped take care of her dad the last week of his life, helped problem-solve remotely before that, and just wants others to have the information we didn't know or have at the time.
If your loved one is facing a major medical issue and you want to help them make some decisions about what type of care they would like going forward, I recommend walking through the POLST form with them. Especially if they are going to be cared for in the home. Their primary care provider can help with this form, and you can find more information on the POLST form from the Wyoming Department of Health website here.
Next, talk with your loved one's primary care provider about home hospice/palliative care or an in-home evaluation. Many times, there is a negative connotation with hospice care, but they have patients graduate from hospice care frequently, and they were just there to get them back to health and functioning day to day again. Call early and get the evaluation done; these programs are there to help.
Initially, it may seem like your loved one isn't changing much or declining, but part of this may be because you or their caregiver is dealing with the diagnosis day to day and doesn't see the overall decline. Make sure to note any changes for hospice, a decline in eating, a change in sleep patterns, or a reluctance to shower or practice personal hygiene. Declines in weight, unsteadiness when walking, and shuffling of feet, all these items are taken into account when your loved one is evaluated initially and for re-evaluation.
My dad was on home hospice care for almost 13 months. At the beginning, we were not sure we needed them much, but it was a relief because we also knew he could go downhill at any time, and the help with that and working with and contacting the mortuary after was a comfort, just knowing we weren't alone helped.
During that time, I can say looking back at my, my sisters', and my mom's Amazon purchases is very random and chaotic. I had a reason to look back through my purchases last month, and the memories came flooding back. We bought x to solve for y, and z didn't solve what we bought it for, but it was a good try... All of that is for another post or day, I think. This is just to let you know, sometimes it is just easier to buy the thing and have it there in two days or less, and solve the immediate need. You may look back a year or more later and think about how you were in a form of survival/solution mode, but you made it through, and that is what counts.
We also made it through the anticipatory grief. For many years with Alzheimer's, we lost something new every month with dad, then every week, and then near the end, it was just there, almost like another person in the room with us. My dad would randomly show up with his smile and a memory for a brief moment. We grieved so much during those years before my dad passed that the week between his actual passing and his celebration of life seemed to move so slowly. We were torn between wanting the world to stop and acknowledge our loss, HEY WORLD MY DAD DIED AND HE WAS SPECIAL, and wanting to somehow get on to whatever our new "normal" would be. Anticipatory grief, and grief in general, can do a number on you, in ways you don't see coming at all, take a year, take two, do whatever you need to feel like your heart and soul are healing from an eternal wound. I recommend finding a therapist you can talk to who specializes in grief counseling. I have one that is amazing, logical, and just helps me even now with my maintenance appointments. If therapy isn't for you, there are many grief groups available in even the smallest communities across Wyoming, or many groups on Facebook for all different types of people. Find what works for you.
I have a lot more to cover but that will happen in a future post, the processes we went through and what we learned after my dad's passing (my dislike of Verizon has grown exponentially), not giving up on your people while caregiving for a loved one, and whatever also comes to mind over the next month or two before I post again. I am hoping to post more frequently, though, as I think this is an important topic. Let me know what you all would like to talk about, how I can help, or what I can find answers to. I know people who know people :) Take care of each other, folks. Have a blessed holiday season, and here is hoping you find moments as a weary world to rejoice - O' Holy Night
Article Action Items
1. POLST form (available in most states, may be under another acronym or name, linked above)
2. Palliative/Hospice Evaluation and Care as early as possible
3. Note even minor changes when your loved one is on hospice or palliative care
4. Buy the thing that will solve the immediate need if you can; it helps remove the mental load, a little
5. Find a grief outlet that works for you; it just has to work for you
.JPG)
