NeedHelpWithMom Asked December 2022
What changes, if any, will you make for the upcoming new year? 2023 is just around the corner!
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My caregiving days are long gone. I cared for my parents for many years.
As I read all of the difficult questions on this forum, I think about what could be implemented in their lives in order to cope better with their challenging circumstances.
Are you keeping things the same or have you decided that changes are in order for the upcoming year?
If you are a past caregiver, please let current caregivers know about changes that you made as a caregiver that improved your situation.
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We had a rough year, both DH and I had COVID, big time, for 2+ weeks. This was while our new house was full of contractors and installers, etc. I was too sick to make decisions, and so some things just didn't get done.
I had a cardiac ablation to calm my erratic heartbeat--something I have had for 20+ years and thought was just normal. This procedure was done a week after mother's funeral. I do feel a lot better now, as I am still healing from that.
Trying to make new friends, trying to keep relationships healthy and alive with my kids, watching DH struggle to actually retire--and worried how he'll just wind up watching TV in his recliner all day long.
I'm going to take care of myself, really for the first time in my life. I can't do more for others if I am not strong. I hope to never see my MIL again (that I CAN control) and work on building some other relationships.
I promise myself I will never live my life caring for someone else more than I care for myself. My bucket is EMPTY and this year, I plan to fill it up with good things that I LIKE!
Thank you for saying this!! Folks not in this situation really have no idea
I would have been more prepared knowing what I was dealing with.
She developed dementia later on and I had no idea of what that actually meant. I thought that it was something that people referred to when they spoke about someone being senile or slightly forgetful.
I didn’t think about caregiving in the long term. I kept pushing myself to get through it day by day.
It’s incredibly sad to know that often years go by before important decisions or changes are made.
Caregiver support groups are wonderful. I only wish there was some type of preparation class for caring for the elderly.
We need to be more aware of care providers such as home health, agency care, private care, assisted living, memory care, skilled nursing facilities and hospice.
Before we became parents there were parenting classes held in hospitals to prepare us for caring for our children.
How many of us are prepared to be caregivers? I know that I wasn’t fully prepared to take on such enormous tasks.
"I didn’t think about caregiving in the long term. I kept pushing myself to get through it day by day."
It starts with the LO needing "a little help," and then one day you suddenly realize that you are now "living their life FOR them," because they are now completely dependent on you propping them up, minute by minute.
The insidious scope creep of caregiving is no one's fault. But I tell you what, the next time I am called upon to care for an elderly LO, I will know SO much more about what is coming and will make sure to bring in "the village" much, much sooner.
Hubs (who's driving me up a wall lately) and I have bought a house about an hour from where we live now, and the first half of next year will be spent remodeling it and getting it ready to live in. We're doing it in preparation for our own eventual geezerhood and doing the bathrooms to ADA standards, so I can just die in this house and not worry about ever having to leave it solely because it can't be maneuvered through with a walker. (As if NOTHING else could possibly happen to make me have to leave! LOL)
I intend to get heavily involved in the community, and be busy every day of the week. My brain is just withering away with inactivity and depression, and now that I have the freedom to do what I'd like, I don't have the slightest idea what to do. That's why I've chosen this new location -- it's a vibrant, volunteer-oriented community where everyone knows everyone. I intend to leap in with both feet and get involved in charities that have nothing to do with caregiving or the elderly.
That's the only part that makes me a little sad -- I've always loved older people and naturally gravitated toward them, but emotionally, I'm utterly and completely burned out.
Thank you for this wonderful post.
Personally, I find transitional periods in my life the most stressful.
Good luck with the remodeling! It will be worth the effort after it’s finally completed. You may need a few Tylenol while going through it though! Contractors are an interesting bunch of people.
I am certain that you’re going to find your place in your new community. Sounds great.
My visits went from every day, all day long, to every other day when I moved and was further away from the Home that I was previously. Also, Mike became not lucid anymore and mentally declined a great deal due to lack of oxygen to the brain. He has COPD and stroke and now his kidneys are infected. It's only been a year, but such a difficult year!! I became weary and down.
It is winter and I still go but only about twice a week. I am limited to a scooter [ I have spinal stenosis] and scoot about 1/4 mile in the snow and ice. I am wrapped up warm and I don't mind but I just had to cut back my visits. I realized that it doesn't mean I love him less, it means I like myself enough to take care of myself. I no longer want to go to this home.
My windows here look down over a beautiful garden. Over 400 spring flowers have been planted thanks to one of the tenants here. I want to see the flowers bloom. I am alone and very lonely but going to the home, and to a husband that doesn't recognize me anymore, will not solve my problem. I am 74, Mike is 82. If God wills it, I will end up there but not yet. Not yet.
I just wanted to share this with you. Put yourself first, or you won't be able to help those you love. I was ragged and worn, and I'm healthy and well rested now. The nurses are good to Mike. He's ok. With or without my everyday visits.
Merry Christmas and a very Happy and rested New Year, to all you caregivers!
Your property sounds lovely. I hope you enjoy it for many years to come.
Happy New Year everyone and thank you for all your help.
I am so sorry for all of your many losses. That is a lot to deal with throughout the years.
You sound wonderfully compassionate. I feel your warmth in your words.
I believe that you will work through your grief. You sound incredibly realistic to me and optimistic about your future.
I sincerely wish you the very best in this upcoming new year and beyond. Take care. Wishing you all of the peace in the world for you. Happy New Year 🎆 to you!
Continue work on mentally moving on so I'm prepared for the next season of my life, which I pray will be peaceful and joy filled.
Continue to stay in touch with my cousins who are still living. Interestingly, we have begun over the past 2/3 years to re-establish our relationships with each other after having wonderful childhoods growing up together and then drifting apart over the years.
Forgive myself for my normal reactions to my sleep and my days being wrecked by dementia hell. Caregiving is one of the most difficult seasons of my life and I want to stop being shocked at how easily it can overcome me.
Last but not least .... Continue pursuing emotional, spiritual, mental and physical well-being through Bible study and prayer, eating as clean as possible, doing some form of exercise every day and keeping in touch with friends and family.
My folks threw NOTHING remotely sentimental away and having no help from sibling I ended up dealing with literally all of it. Now I feel like they’ve lived big lives and just LEFT this tremendous tons stuff with me, the janitor/drudge/museum keeper. Like they just thrust that role upon me, keeper of their Legacies.
Finally I just had it. What about my life? I need to build it and feel like I’m worth more than being the family janitor. So I’m getting rid of a bunch of the papers and pictures and stuff - NOTHING CRAZY - we’re talking excess pictures and freaking report cards from elementary school etc…There’s so much of the good stuff left it’s just beyond too much at this point. If it’s treasure of course it’s being kept. (And a lot has been given out )
My time and mental stress is still tied up in family stuff but physically I’m moving on from ‘ that which doesn’t serve me’. It’s very difficult to see papers from all these people who have passed, and of course at some point I’ll have to clear mom’s space she’s in now. But it’s amazing how even clearing out two boxes in my house of Excess Legacy I Didn’t Ask For makes me feel more like…..me?
I’ve also promise myself a beach cruiser bike when mom has passed. Gonna put a basket on the front and the back and then just look for the lady with messy hair and a baguette and flowers in the bike basket. This image sees me through some cranky days…
My background: 8-10 years caregiving working with individuals in various spectrums of dementia, and working w families (some out of state) providing assessment reports. Included in those 10 years - around 5-6 years, offering, care mgmt, i.e., hiring caregivers, attorneys, emptying houses, coordinating health care and more). I have one client in memory care now and offer organizational management occasionally as requested. My main 'work' is being legally responsible in all aspects for my friend of 22 years currently in a nursing home. I manage everything for him.
THIS IS WHAT I FEEL ARE THE MOST IMPORTANT AREAS TO CONSIDER:
No 1: Understand that dementia is due to the brain chemistry changing. And, that how a person responds / reacts is not meant to be 'personal to you.' This helps with maintaining a personal equanimity / inner balance (emotionally and psychologically) to be as present as possible thereby being the 'best' person I can be to support the person with dementia. (And not getting into an argument... see below. There is no winning 'talking' logic to a person with dementia - see below).
No. 2: Set boundaries. Whether dealing with a narcissistic personality or someone simply (not so simple) angry, do set limits. If they cannot understand, step away for as long as needed, even 5 minutes will help. (See No. 4 below)
No. 3: SELF CARE. With the stressors calling to numb out stress, it is essential to take care of yourself. Eat as healthy diet as you can, exercise, meditate.
No. 4: Develop COMPASSION for the person. This will help the caregiver remember to shift from taking responses / behaviors personally to being present and able to do what is necessary.
No. 5: Reach out for support as needed. Enlist social workers, family, friends, other caregivers, read / study Teepa Snow's website / webinars (I did Teepa's webinars for 1-2 years to understand what dementia is. It helped me develop compassion, and certainly needed understanding of how the brain functions.
No. 6a: NEVER EVER argue. This is a 'no win-win'. The person is fearful of what is happening them (or doesn't know), scared of losing the independence they (believe they) have, and they think they know what is best for them and they do not. So . . . #6b !.
No. 6b: The best way to respond is by REFLECTIVE LISTENING, i.e., "I hear you saying xxx." A person is validated when they know what they say is heard... that someone is listening.
- I find that my client in memory care talking jibberish still responds to compliments and caring gestures. Do not confuse their changing brain with their (in)ability to feel - and understand when a person provides non-judgmental, compassionate interaction.
I could go on and on although this is a very substantive list of how and what I learned over the last 10+ years.
Gena / Touch Matters