Posted 9/14/22
“Is anything too hard for the Lord? At the appointed time I will return to you, about this time next year, and Sarah shall have a son.” -Genesis 18:14
Hospice has been great for my mom and for our family. Here are just a few of the great things they have done to cement themselves in the foundation of our care team:
- They consistently give her baths. Better said, the same person gives her the same bath much, much more often than not. This is HUGE, in my simple mind. I have shared many times here that struggles in hygiene are a tremendous challenge to most people attempting to care for loved ones at home. Even nursing homes struggle in this area. Yet baths are critically important in fighting back infection, in feeling good, and in staying healthy. Think it through, friends…you are struggling with memory, perhaps badly. Someone who looks vaguely familiar comes up to you and tells you it is time for your bath…so get naked. There are some memories that are fleeting, even to me as a cognitively normal, 50-something. I mean, can anyone really always remember where on God’s green Earth you parked at Wal-Mart every time? But one thing that seems very easy to remember: modesty and the desire to only be naked when we want to be naked, if you will. Here are some helpful videos about bathing struggles: LINK and LINK and LINK and LINK
- They are advocates– I and/or my siblings can call Ruth and get an unbiased update. Nothing rose-colored in the glass here…just the truth. They visit(ed) at least 3 times a week. They fight for us.
- Stuff– They brought mom a new, more suitable wheelchair. They have brought other gear. The stuff they bring has been great!
- What they consider extras I consider awesome!– They will come to read the Bible, sing/play music, groom, etc… They gave her some wonderful perks that the understaffed nursing home couldn’t give in a million years.
- Peace of mind– I acknowledge that the typical nursing home worker has seen death many times. I get that. However, a hospice nurse is an expert in death management, if you will. No opinions…just facts as best they can discern based on extensive experience on the topic. We want mom to pass away peacefully as best she can some day. Hospice gives us the best opportunity to help facilitate that. It may sound morbid…that is my fault.
- Other benefits I have forgotten…
We got word this week that mom is stable enough to drop back to only palliative care and away from most all of these services unless something happens that changes it. It is the hospice equivalent to the 911 operator or policeman telling you that there isn’t much that can be done about a non-tresspassing, creepy stalker until this bad guy that is obviously GOING to do something bad is actually doing it. Their rationale is that she is stable, that my stepfather comes every day to feed her lunch, and that she has her family as support. She is rated nearly a 7F on their 7-point dementia scale (Alz.org prefers a 3-point, easier to evaluate scale as do I). (Reminder…the underlines are links…I always add links for further research and never to sell you anything). From what I read of the scale, the only thing that separates her from being a full-blown 7F is she can sometimes smile and can still hold her head up and swallow food. The smile part is rare. The food is labored but still working. Her neck is still strong and her whole body has the Parkinsonistic traits of rigidity, so I see no reason to expect her head to droop soon.
Here is the explanation from JAMA: “The FAST scale10 is used to assess functional change among patients with dementia and consists of 7 major stages with a total of 16 successive stages and substages (possible range, stages 1-7f). Stage 7 represents the most advanced dementia and consists of 6 substages, 7a to 7f. These stages are defined as follows: 7a, speech is limited to 1 to 5 words; 7b, all intelligible vocabulary is lost; 7c, nonambulatory; 7d, unable to sit independently; 7e, unable to smile; and 7f, unable to hold head up. Stage 7c of the FAST scale has been suggested by the National Hospice Organization as an appropriate cutoff to enroll persons with a primary diagnosis of dementia into hospice.9 To be considered as stage 7c, patients must have progressed through all the previous stages of the FAST scale sequentially.”
Here is some great info from Compassus: LINK
So where we are is she is as bad as yo can be without being dead…pretty much…but not quite enough worst bad to have the same care she has had for over 2 years now. When my grandma failed to have hospice care, she died within the month. (See pictures of her and mom below) We won’t go down without a loving fight. No blame. No finger-pointing. But we are advocates and she can no longer advocate for herself. If we don’t “leave it all on the field”, from a football lexicon, we are not helping as much as we can…so off we go. Is it money? Staffing? Others worse off? Even the rationale is hard to work out…
Dementia really stinks, friends. We need to find a cure. Wanna help? Go to a Walk to End Alzheimer’s and/or donate. That is one way. Here is my team’s page: LINK Participate in Clinical Research. Here is a link for that: LINK Donate your brain when you die. The researchers need brains to work with and you won’t need it when you are gone. I promise they won’t be coming for it early. 🙂
Am I mad at the Hospice? Nope. They are on my team. SHOULD she have their service? By their scale, apparently not…and should never have had it minus a few weeks during and after seizures even though she clearly has less than the 6-months to live threshold? Adulting is hard. Caring for those with dementia is super hard. Caring for someone you love with the disease is on the Mount Rushmore of hardness… How bad is bad enough? I guess it depends on who you ask…
#EndALZ
(Lots of pictures this week. Explanations for some of them in future articles…)
