Caregiving Take-aways | Post-it Notes

Caregiving Take-aways | Post-it Notes

Surviving Dementia

After handling my mother’s care, I’ve pulled together some key points to keep in mind when caregiving especially when working with dementia. If you want to hear more about where these insights came from, this is the link to our story.

Survive

It’s ok to sleep walk through life if you are going through handling caregiving for someone with dementia. Hell, this is true with whatever pain you are experiencing. I’ve thankfully (yep strange to say thankful here) been through significant loss before and gone through the numb/going through the motions part where the world is depressing and gray. This is usually the time for vices to rear up with the potential to swallow you (drinking, drugs, sex, TV, food… whatever pushes that dopamine button). Do what you can to avoid vices that can cause irreparable damage.

As much as you can, accept the sleepwalking stage and force yourself to keep showing up in the world. If you are fortunate to work on something where you can sleep walk through it, do that. If you get invited out, go. Let your friends and family keep you engaged. Keep moving. If you keep moving, you’ll stay tethered and something will click eventually to pull your engagement back fully into the world.

Let the Emotions Out

In the story about my mom’s dementia, I mention many times I broke down which meant I cried, I had panic attacks, I had a lot of emotions that came at random times over the years. I found that when the emotions came, I needed to let them out and then I got back up and kept moving.

Be Flexible

Use “yes and” because that was what helped my mom and I to get through this. Initially, I fought to be heard by my mom and keep her in the reality I was perceiving, but I learned from This American Life recording (a recommendation from someone in my network) that this can cause a major rift with the person you are caring for. Strong emotions lock in memories longer whether very happy or very negative and in order for me to help her, it was crucial that she stopped seeing me in a negative light. Doing “yes and” from improv created a positive space for both of us and helped pull us together again. Going along with what she said and supporting her perspective didn’t harm anyone and made her happy that she was heard. It also made it easier to redirect her attention.

After I got into it, I wanted to inject everyone around me with the mindset. Watching others try to force my mom into a reality became annoying. It helped me appreciate this is very applicable in general. It’s sad to see how many people (even ones who are trained to work with memory care patients) would fight to bring her into their reality, and it was also lovely watching strangers who just went with whatever she said. She really liked those strangers.

If she claims she’s been somewhere she’s never been before, I say yes and I remember when we were there and how you had this really great cookie. Or if she tells me she hates the doctor’s office, I tell her I agree how the doctor’s office is the worst and how cute is that baby with the mom sitting in the waiting room. Redirecting the conversation is also an important technique when you need your charge to stop focusing on something. The only times I wouldn’t use “yes and” and redirection was when I couldn’t get her redirected and I needed to stop my mom from doing something that might harm her or others.

Trust your Instincts

When I started to think this was happening and realized I was initially alone in dealing with it, I took steps like going through paperwork and cleaning out and assessing what was in the house during each visit. I’m grateful I spread out that work and had the chance for it. I worked on getting paperwork in place to ensure I could take control and manage my mom’s affairs when time came.

When I started thinking of moving her, it resonated with me it was the right path. I did the research and took actions to line up the groups I would need to help with the change. My friends who supported me, admitted they were doubtful of the move into a senior living facility, but they supported me through the decision. After seeing how we were once we settled in, they realized and shared that they saw it was the right decision. It’s valuable to get other people’s opinions, but if you are the one at the end of the day with the responsibility then you have to go with your instincts on what is best.

Buck Caregiving Expectations

You are not required to do anything… nothing. Do what you can and leave the rest. Her siblings were not required to do anything, neither were her friends or my friends. Just because I’m a woman, or because I don’t have a family or I’m her child… I have no requirements here. I say this because it matters to free yourself up from what you “should” do to do what you can do. Should can kill you.

Being a caregiver is a bullshit job and that is true for any form of caregiving. Yes, it is a bullshit job especially for women because it is still common that we don’t get much credit for work that is expected of us while men will get lauded as the most amazing people for doing even a fraction of the caregiving. There were many expectations about how I should care for my mother’s welfare and I found a few who assumed I would move back to Houston to care for her. Yes, that’s still a mindset. I mean I’m a single woman, clearly I don’t have anything else going on that matters.

Remember it is a bullshit job (bullshit, thankless — same difference) and do your best to ignore any expectations you perceive. No one is living your life but you. Focus on what you realistically can do.

Forgive Yourself

Cliched but true. If you are caregiving there is a good chance you don’t feel like you are doing enough. There will probably be plenty of people who will tell you that you are not. Ignore them. Forgive yourself… for not doing all the things, for thinking thoughts you feel are horrible, for hating the situation and the person and those who mean well but are making it harder.

I was far from kind, patient or understanding when this started and said things, did things and thought things that I hate myself for. That happens for many. Do your best to forgive yourself and move on.

Blame the Disease

When you are angry, sad, tired or exhausted then blame the disease. Always blame the disease. It deserves all the things you feel and hate. Your charge and even the people who are not helping (unless they are doing explicit harm) really don’t deserve any emotional outbursts. Take it out on the disease.

Get Help

If you can get help for this journey then get help because it is hard enough as it is. Don’t feel like you will be beholden to people for accepting their help. Accept it and get through it. If you absolutely can’t stomach accepting help from someone then find someone else or accept that the situation will not play out the way you want and adapt.

I would not be here without my friends… I love them so dearly for being there for me. Sending flowers (at work and home), reminding me I can still live my life, giving me a place to land last minute and regroup, showing up with family in tow to help me pack, taking my call of panic a few days after the first move, taking me to a theme park and helping me feel like a kid for a day, giving me furniture, showing up to bring my mom chocolate ice cream or pictures that she cherishes and all the things that are too numerous to list. So many people have done so much and this was because I asked for help.

Block Out Judgements

Shut out the people who are against you or make it harder to do what you have to do. Granted, that is if you can shut them out. And for those of you out there who want to express opinions and fight a caregiver, take a minute before you do. You may not know what that person has been through or is going through, and unless you are willing to do the job, then give them the benefit of the doubt. Look I’m all for giving constructive criticism and sure there are cases where people get taken advantage of. Still ask how you can help, and/or just help. Stop pointing out problems and pick up a shovel and get in there.

Beware of Bad Actors

Bad actors take many forms and can even be family and friends (whether deliberate or not). Not surprising this belief that people may be taking advantage is common which is why I hit so many barriers when handling my mom’s affairs. In her last year in her home, I saw how companies, charities and scam artists started to clue in on her vulnerability and ramp up calling her and sending mail to prey on her. Do your best to protect them by redirecting mail and the phone, monitoring email, and taking control of finances and other personal matters as it makes sense. Be ready to defend taking control of your charge’s life and give the benefit of the doubt for people who are skeptical of your intentions. If you meet resistance you are possibly finding others who care that the person in your care is not being taken advantage of.

Pick Battles

Sometimes it’s ok to let your charge get stuck on problems for a while and not solve them (despite any desire to fix all the things). If they are distracted by a harmless issue, let them focus on that to keep them from getting stuck on something that would be problematic. Like my mom would fixate on fixing a window in the house which was a fine distraction compared to her obsessing about how to get her car back. She needs a problem to obsess about. No matter how many issues I fix, she finds something else to fix. So I let her obsess about stuff that have little consequence to keep her from breaking bigger things like locks on doors I need to keep closed.

Live Your Life

When my dad was sick, my parents would constantly tell me to live my life. They didn’t want me to get completely sucked into his illness and have nothing left to go back to when he passed. That wasn’t easy to do, but I managed to keeping living my life.

I’ve kept those words in my mind as I’ve been dealing with my mom’s illness. She even will say that to me at times when she seems to be pseudo aware of the situation. It make it easier for me to leave so I can go out with friends, go to work, and even get up in the morning.

My friends and family who are moms tell me this too with this near urgency that I find charming because they are clearly thinking of their children and what they would want their children to hear. They tell me my mom would not want me to completely sacrifice my life for her, and they are right.

Laugh & Have Fun

When my dad was diagnosed with cancer, there was an Archer episode that came out a couple days later where Archer had breast cancer and it was exactly what I needed to see at that time. As I’ve been dealing with my mom’s illness, I take the laughs where I can find them whether I’m watching comedy on YouTube or doing something silly with my mom like saying “whee” with her over and over when I turn a corner in the car. Whatever works for you to help you laugh, do that because there is enough sadness and challenge to get through.

Don’t hide away your charge either. Take her/him out to engage in the world. If people can’t handle the confusion and behaviors that seem uncommon that is their problem, not yours. We had this lovely day in Feb. 2018 where I took her on a cookie tour and we stopped in a bar to play pinball and pool. She made up the rules like moving the cue ball where it was easier to hit, using random balls as the cue ball, and putting the 8 ball in the hole whenever she felt like it. She laughed and jumped up and down every time a ball went in the hole. We also drove by the beach that day, and she kept exclaiming how beautiful it was and how tall the trees were. Have as much fun as you can while you can.

Respect Your Charge | They are still a person

Remember your charge is a person, and keep that in your mind as much as possible. Do your best to make sure they are treated well, fed, have clean clothes and bedding, are happy and healthy, have access to activities that make them feel valued and have access to things they need. Listen to what they are saying because even though their speech patterns are confused, they are trying to tell you things. And they can still be very insightful. They haven’t fully lost their minds especially in the early stages but even in the later stages. When someone is diagnosed as having dementia it doesn’t mean everything they say is confused but many will easily write off anything the person says after diagnosis.

We’ve had many moments where my mom says the most thoughtful things like how important it is to be kind (especially to those who need it). How short life is and it’s important to cherish it. I’m grateful for how she can still share her ideas me. As she said very recently, “Life isn’t easy but it can be pleasing if you work at it.”