humanythings

[humanythings]

I'm definitely a frugal thrifty type. DIY is a beloved hobby. I constantly find great deals or make things. When my situation changes or I feel like a new style one of my great joys is rehoming cool useful stuff.

A lot of family and friends are like 'why don't you sell that?' I think it is way more fun to be the source of some college kid's awesome curb score. Once I left a pile of manga out and this teenage boy knocked on my door to ask if he could really have it, like, for free? Oh you polite child. Yes! I scored them at a used bookstore years ago for like $5 and while it's been wonderful living together it is time for both of us to have new relationships. Take them, love them and send them onward one day to bring joy, happiness and sword slashing ninjas to others!

I have a bunch of things I myself got for free or super cheap but are fabulous and cool. I have a need and joy meter for rehoming. Does someone really need this item and can't easily aquire it? Is there somewhere it would be super useful? Will someone love and cherish this thing because it is awesome? Then I hunt for spots highest on that scale. It's a little parade of good things that travel in and out of neighborhood homes like friendly kitty cats.

I've even had a few things return years later. I'm like 'Ok, I did kind of miss you. We can give this whole living together thing another shot.'

[humanythings]

Hi!

After a stint of working with an array of families struggling with a combination of cognitive decline and end of life I saw a pattern over and over that I found really heartbreaking. This is my two cents on a very sensitive subject and I'm placing this out there with all my love and best intentions. Everyone in these circumstances must find their own path and there are no magic answers when a person we love starts to slip away from us. This is just a set of things I found that made some interactions with loved ones go a bit smoother when dementia, Alzheimer's or other irreversible cognitive decline was in play.

Cognative decline is heartbreaking and scary for everyone. For the person, it happens to it can be confusing, frightening, disempowering, personality altering, emotionally unstable and the depth of impairment can shift from day to day.

For the family, a person you know and love can begin to behave in ways that are unfamiliar, lose memories you share and hold dear, may be unable to fulfill the role they have always played within the family relationship structure, may need help and assistance and may not be reasonable or rational about those changing needs.

Unfortunately the person you've known and lived with is changing. They may at times be and then not be the person you know. That change can't be halted or repaired in most cases. You've all entered the Alice and Wonderland world of cognitive decline. Alice goes through Wonderland through both enchanting and frightening scenarios always trying to navigate an arbitrarily changing landscape that makes little sense. In some places she ends up too big or too small or keeps being told illogical things by those she meets and she keeps trying to get Wonderland to fit the reality she considers 'normal' and is endlessly frustrated and disappointed because the world doesn't operate according to her 'normal'.

This is what I see happen in a lot of scenarios. A lot of people want desperately to keep 'normal' and it leads them to attempt to constantly challenge their declining loved one to 'correct' what they've mis- spoken or misremembered. This seems an act of love in most cases. People are trying to pull their loved one back into the reality they have habitually shared and are trying to keep that person with them. Things I heard often were things like:

'No mom, that's Jack not Edward.'

'No dad, don't you remember? That's a picture of your parent's house in Maine, not my house.'

'No, I'm your daughter, don't you remember my name is Emily not Jane.'

Over time I found some things that really seemed to help smooth transitions and help the people I was working with to stay in a more positive emotional state. Granted it is very different for me coming into a home for shorter work shifts than family members who have strong emotional bonds and who may be suffering from caregiver burnout with few to no breaks. There are also those who are dealing with a person who has brain alterations that cause meanness or violence so these methods don't always work. But for what it is worth and for those it may help here is my list.

1. Go with it. This is Wonderland and if 'normal' is left at the door it opens a wonder of narrative and sometimes a bit of magic.

Today you might be Jane or Jack or Edward or anyone. There is no need to challenge this most of the time. For a person who is in decline all it does is make them scared and confused because something is really wrong if you can't remember your own child/husband/friend's name. It is possible to have entire lovely positive conversations with a loved one as they time travel back and forth through memories of their lives. Some are real, some are altered, some are made up. That's ok, ask them questions that are about preferences or emotions but aren't fact based and have many right answers.

How soft was Fluffy's fur? Was that your favorite color? What was your favorite thing about ....? How did you feel about that? I don't have a good memory of that, can you describe it to me?

And let them talk. Many will enjoy the winding trip through this mental landscape whether real or imagined and it gives them a way to seamlessly transition back to themselves as their symptoms worsen an improve. Some may not even notice a lapse if no one calls it out which can spare them confusion, discomfort and fear.

I once had someone regale me with charming stories made up on the spot about objects and pets in the room on par with a Beatrix Potter story. It was magical!

2. Do the fun thing, in the moment. Often the oldest and most deeply engrained habits stay the longest. If your family has a set of card games that have been enjoyed forever and your loved one still enjoys them, play! Cook that bread recipe you've made a million times! Enjoy habitual things both large and small that everyone can still do. Have Christmas in June, breakfast for dinner or any other doable enjoyable thing that makes everyone smile. It doesn't have to make sense it just needs to be fun. Just watch for fatigue and make sure there are smooth ways for your loved one to drift in and out either physically or mentally.

3. Try and avoid speaking to them like a child or as if they aren't in the room. Loved ones often drift in and out. They may be non verbal for long periods or act like a tantrum throwing toddler at times but they can also drift back to something like their old selves. Always addressing them normally means those brief moments can be spent connecting in the best possible way rather than smoothing anger or indignation at being treated like they aren't there or aren't adults which can be hard for them in many ways.

4. Odd behaviors. Obviously it is important to keep people safe. The news often has stories of confused seniors wandering out of the house and getting lost and steps to protect them are important. There are a lot of other things that can happen that are odd but largely harmless. Sometimes there is regression to childish behavior or difficulty with emotional regulation. If it isn't hurting anyone it can help to simply be patient or just let them do whatever if it seems to make them happy. Often cognitive decline happens toward the end of life so every moment is precious and has the possibility of being happy or unhappy. Any time weight can be added to the happy side in a harmless way then that's great! What can that look like? 3am trips to the fridge to mix three bowls of cream cheese and brown sugar all part eaten to be found by sleepy and often exasperated caretakers in the morning. Taking out the Christmas ornaments in June to decorate the mantle, wearing three favorite outfits inside out/backwards/on their head simultaneously. Welcome to teatime in Wonderland. Try and have fun with it where you can.

5. Self care. Try and get good support yourself. It is hard to lose a person you love a bit at a time. Usually people start noticing little changes and sometimes large ones. They can be really out if character or disturbing. One day everything is 'normal' then it isn't and can flip back and forth with 'normal' receding a bit more each time. It takes a lot of emotional strength and energy to live in this altering reality as a caregiver.

Wishing all the best for folks taking this on.