Posted 4/9/25
Therefore encourage one another and build one another up, just as you are doing. –1 Thessalonians 5:11
Some shows on TV are edifying, others not as much. I enjoy Cheers, even if it isn’t exactly like watching Veggie Tales. However, I was watching the other day and noticed just how much their soundtrack writer knew about dementia in the first few stanzas without realizing it. A case study, shoehorn not withstanding, is here:
Here are the lyrics:
Making your way in the world today
Takes everything you’ve got
Taking a break from all your worries
Sure would help a lot
Wouldn’t you like to get away?
All those nights when you’ve got no lights
The check is in the mail
And your little angel
Hung the cat up by it’s tail
And your third fiance didn’t show
Sometimes you wanna go
Where everybody knows your name
And they’re always glad you came
You wanna be where you can see (ah-ah)
Our troubles are all the same (ah-ah)
You wanna be where everybody knows your name
Source: Musixmatch
Songwriters: Gary Portnoy / Judy Hart
Cheers Theme (Original Demo) lyrics © Addax Music Co. Inc.
This one kind of writes itself! I will start at the top 🙂
- “Making your way in the world today takes everything you’ve got“. Boy Howdy is that ever the case these days?!?! Eliminate caregiving for a minute and just live through a day. There is always something. Dump in 36 heaping helpings of caregiving and the task seems like a Herculean task. We need a care team…a village of care teams…and many are winging it alone. Please call the Alzheimer’s Association helpline at 1-800-272-3900 and call your local Area Agency on Aging to start getting help. This caregiving life takes all you got!
- “Taking a break from all your worries sure would help a lot. Wouldn’t you like to get away?” If you ask the typical caregiver, they have an optimistic if exhausted outlook when they evaluate whether they can keep it up. They need help from the above agencies, from the church, from family, from neighbors and from others. There are other options out there for help as well that they may not have thought of. One pretty universal option in the US is Hilarity for Charity Caregiver Grants. (LINK) These provide some respite time for struggling in-home caregivers. Hospice may be another option that many do not consider. (Screeching sound) “Wait blog boy”, you might say, “My loved one isn’t THAT ill!” There are a range of services through Hospice and similar agencies that will provide a wealth of help, covered by MEDICARE (Not need-based financially) that can allow some time to get away! Here are just some of the benefits: LINK The main qualification is whether a reasonable expectation of end-of-life could be within 6 months. Yes, this is sad…I get it. I really do. However, it is NOT giving up, it is enhancing your care team and digging in to fight harder. My mom was on some form of hospice/palliative care for around 4 years! They had very consistent, helpful staff helping her at the nursing home. I could text my hospice nurse and get an extra set of eyes on my mom any time I wanted. It was a GREAT addition…and she lived longer, most likely, because of their help.
- “All those nights when you’ve got no lights, the check is in the mail.“- Couple of things here: Often the loved one with dementia first shows that they need help when their bills go haywire. We have to be involved enough to be able to recognize that they need help. (Shifting into Reverse) We also needed to have a power of attorney set up so that we CAN help with these needs. Please start discussing life with an elder law attorney should the need arise, well before you actually need it! There are options then that will get harder and harder the longer we wait.
- “All those nights when you’ve got no lights, the check is in the mail.” also reminds me that the tremendous financial burden to caregivers is often not noticed. According to the NIH, “From time of diagnosis (mean age of 83 years) discounted total lifetime cost of care for a person with dementia was $321,780 (2015 dollars). Families incurred 70% of the total cost burden ($225,140). Medicaid accounted for 14% ($44,090) and Medicare accounted for 16% ($52,540) of total cost, respectively. Costs for a person with dementia over a lifetime were $184,500 greater (86% incurred by families) than for someone without dementia. Total annual cost peaked at $89,000 and net cost peaked at $72,400. Compared to natural disease progression, reducing functional decline or behavioral/psychological symptoms by 10% resulted in $3,880 and $680 lower lifetime costs, respectively.” The Alzheimer’s Association adds these numbers: “Today, more than 11 million Americans are providing an estimated 18.4 billion hours of unpaid care valued at $346.6 billion to people living with dementia.” These numbers don’t come out of thin air. Caregivers get a double financial challenge…they pay part of the care and what it NOT directly paid by them is paid by their taxes. Double dipping isn’t great in nachos and bean dip. It really stinks in expenses for dementia care. 🙁
- “And your little angel hung the cat up by it’s tail” ring a bell? Note here: I don’t like relating folks with dementia with children/childishness, because of respect issues, but there are very similar challenges that we can’t ignore. Behavior issues abound, especially in the early- and mid-stages when they are more physically able. There isn’t enough time or space to list the ways they can hang the cat by the tail, but watch these three videos for a few tips. (LINK) and (LINK) and (Link)
- “And your third fiance didn’t show” According to the AARP, “With a nationwide divorce rate still hovering around 40 percent (though it has been slowly declining for years), it is hard enough for committed relationships to survive in the long term. But estimates of the divorce rate for couples in which one spouse has a serious chronic illness is as high as 75 percent.” While numbers vary on the exact toll caregiving causes marriages and other relationships, experience tells us they are struggling.
- “Sometimes you wanna go where everybody knows your name“- This topic isn’t well-studied, but in my experience and in many I have talked to, there is a very similar feeling when caring for a loved one with dementia and with caring for a bay/toddler in one area: the need for normal adult conversation. I have friends that come to my many support groups as one of the only times they are ever away from their loved one! This is also the secret sauce of the Walk to End Alzheimer’s….we need to be with others and just visit. We need to be seen and feel together. It is mentally exhausting without this interaction and our poor pets are powerless to provide this to us in a way that keeps us mentally in a good place.
- “Sometimes you wanna go where everybody knows your name” Part 2- I have written about our name many times. It should be searchable on the website. Please do me a favor and do the impossible: Let go your loved one remembering your name. It is devastating. It is tragic. It is part of the disease for many if not most. I hate it. However, if we can dig deep and retool our expectations to accept a smile or similar as our connection instead of our name, it will serve us and them better. This reminds me in a weird way of my mom’s “hoarding”. She wasn’t a coop culture hoarder with piles of stuff, she was a dementia hoarder. She had a hidey hole and a bag that she kelp her most prized things. Those prized things were NOT what I would prize in my currently cognitive normal state, they were what mattered to her right then. They were irrational, however, they were important to her so they became important to us. In her bag wasn’t pictures, money, jewelry, and the like. They were used paper towels, a fork, a toy, a shoestring and other miscellaneous things. What becomes important becomes irrational. However, she always knew that I was a member of her tribe somehow partially because I didn’t push her hard, correct her, demand more of her than she had, and similar. Will it always work for everyone? NOPE. Suffice it to say, retooling what we demand of them (like our name) isn’t helpful even if the alternative is extremely sad.
- “And they’re always glad you came.” Are they glad you came? Yes! Always. Is it outwardly apparent? Yes, no, maybe, sometimes, and seldom all bundled into a big stew. However, they need care and you are kicking butt in your efforts to do your very best! The old them would likely be extremely appreciative even if not sadly outwardly. If they were mean and hateful before, they still appreciate you as a wonderful alternative to being cared for by someone who is indifferent. Keep your head up my friend! Your care honors them and your God if nothing else is apparent.
- “You wanna be where you can see (ah-ah), our troubles are all the same (ah-ah)You wanna be where everybody knows your name” Please find other caregivers and love on them. Join a Walk to End Alzheimer’s Team. Join a support group. I have 13 and need 50 to scratch the surface of the need. Our troubles are all different…but they are also all the same: this stinking disease. AND it needs to go away. 🙁 Keep your heads up!
#EndALZ
Two wonderful advocates and I were blessed to meet the District Director for US Representative Mark Alford Yesterday. She listened and interacted with us as we pitched a few drops in the bucket of what is needed. This is the bill were were discussing: https://alzimpact.org/creditforcaring
In my book, allowing caregivers to keep more of their own money otherwise tabbed for taxes is a no-brainer, and our host Becky was very positive about the topic. The bill would provide a $5000 tax credit for in-home caregivers in their attempt top care for their loved ones with dementia at home. Is it enough? No. However, it is a great start.
