I am blessed with the abilities and resources to do this for my parents.
Let me start with the reality of the situation. My mother is in end stage congestive heart failure (CHF) and my dad is suffering from dementia. Together they have remained in their home and independent per their wishes. Our family is spread over the US. They live in FL and I’m in TX. Care giving has been limited to visits during some of the hospital stays for us. It’s mostly worked until now.
September I found myself in a frustrated, angry, fog of pre-grieving, and limbo of unknown state. Mom was home from the hospital with hospice. Hospice can be imminent death to palliative care (non curative) for weeks, months or longer. There were calls to me from the case workers about her health, the fact mom and dad need help, “What is your plan?”, “When do you think it’s time to come?” etc. I repeatedly asked mom and dad if I could come help and was politely denied. “We are OK, We got this.” I respect my parent’s wishes, I knew however things were not OK, and they likely needed help. I wanted to help but not intrude. I wondered how long this could last?
A few days into Sept. mom called and asked me to come and help. WOW, that was huge, she’s NEVER asked for help EVER. She’s a feisty independent person and helper to others. I knew then that things were not good and I was happy and relieved to go.
Before I could get there mom ended up in hospital with severe difficulty breathing (typical fluid build up in lungs with CHF). My emotions went into overdrive, I spun into deep grief and worry - she’s not going to make it, what if I don’t make it, and what am I supposed to do? I made a plan for what I thought was likely to happen and how to best care for mom. I had no idea what I’d really be doing and what huge changes were about to happen for us all.
[Lessons Learned and Tips to Help You Prepare Below]
When I arrived I noticed is that things didn’t look or seem right. Mom’s desk looked like a bomb went off, dad looked awful, lost weight, had a rash everywhere, was confused and in a state of panic. Warning bells went off in my head, Uh Oh, looks like his dementia has gotten worse, this is NOT OK, Oh no!! The situation was way bigger than I imagined. I tried not to panic and remain calm; I had no idea what to do or where to start.
We go to hospital to find out what’s going on with mom. The hospital care team was great with lots of well-meaning and skilled people. I had doctors and caseworkers asking me What is your plan?, What are you going to do about your mother and father? What does your mother want?, Has she signed the DNR yet?, etc. I was instantly overwhelmed with grief, confusion, too many choices, fear of unknown, and deep profound sadness.
Reality set in and I realized holy crap, I have to take care of BOTH parents at the same time. I never considered this. I knew eventually dad would need care. OMG, this is WAY more than I ever expected. Where do I start, I need a plan? There’s so many caseworkers, nurses, caregivers, doctors all talking to us. I’m confused, overwhelmed with a roller coaster of emotions, I’m tired already and I’m the young one here. I thought to myself this is a living in a nightmare.
Nightmare of realizing your parents are in need of help and not doing well. I have to take over. I’m not ready. I really don't want to. What if I make a mistake? Dad’s not doing well, he’s confused, sometimes irritable, and his rash is awful. Mom has good days and really bad days. I wonder when she will just go, I fear phone calls at night. I record in my journal this is the 2nd most awful sucky day I’ve lived through.
I have a unique gift of being able to excel in a crisis situation. It’s how I survive and thrive when stress and chaos occur. I turned into crisis manager, problem solver, fact gatherer, and decision maker. My feelings went numb and leaked out in private. I kept my “game” face on with my parents. Someone has to act confident and advocate for them. It was so difficult and challenging.
Looking to the bright side and making a plan. I felt better about DOing something and making a plan. In the midst of some pretty awful events there were sweet blessed moments. Watching my parents holding hands, listening to their stories and learning new things about their youth.
Mom requests rehab and going home with hospice. So we get her moved (no small insurance, doctor and red tape nightmare) to a rehab/skilled nursing facility. In the mean time, I’m busy taking Dad to various doctors to get his itch diagnosed, feet taken care of, and investigating care for him. Home care is what they both want so we’ll try it. I looked into assisted living/memory care as a backup plan. I get things organized; mom is doing as well as she can be expected. Dad’s OK with the care givers and we have a plan. I feel like things will be OK for a little while and it’s safe for me to return home to recuperate, rest and reenergize for the next phase.
BOOM – Nightmare all over…Phase II
Before I can get my bags off the plane, my phone blows up. Dad’s upset confused and out wandering looking for mom. HOLY …..THAT’s never happened and I know that’s really bad. My nightmare just turned back on beginning phase two of the worst few days I’ve ever had. I’m so exhausted from being caregiver, not there, wondering what is actually happening, working with their friends and caregivers to get dad the care he needs. ALL while I’m remote and far away. What a nightmare. I don’t know what to do or how I can keep doing this. I keep second-guessing myself. Did I do the right thing? What should I do?
The nightmare continues. Somedays it's just a bad dream. Other days I wonder what kind of crazy new reality I live in. I'm taking it one day at a time. Remote care giving and managing my parent’s affairs from a distance is a challenge. That’s an understatement. This is my new reality. Some days are better than others. I know I’ll be returning sooner vs. later. I’m blessed to be able to do this and have a great support structure.
I’ve learned some key things that you may benefit from knowing too. If you've never thought of these things or talked to your loved ones. Please at least consider thinking and talking about them. I have shared some great resources I’ve discovered along the way near the bottom as well to assist you. They were helpful to me.
LESSONS LEARNED & TIPS TO HELP YOU PREPARE
TALK – Talk to your loved ones.
Know what their wishes are. Talk to the entire family so they know the wishes. Make a plan for what if “___” happens. Knowing what they want before it happens can make this awful transition a little smoother. Don’t wait – talk to your parents, children, and family. Make YOUR wishes known too.
- What are your loved one’s wishes? Who knows this? Who might also need to know?
- Have you planned and discussed things like stroke, dementia, cancer, being incapacitated, etc.?
ORGANIZE PAPERS – Make sure you have all of the important papers & advanced directives. They vary by state.
- A few key documents: Will, living will, durable power of attorney (POA), medical directives, etc. … If you don’t have one please do it NOW.
- Organize your finances and records – make sure someone (the executor or POA) knows where the records are and what to do with them.
- Do you know where your own or your loved one’s records are? Who would be able to take over? Who do you want to take over?
ASK – ASK for help. ASK questions.
When you are overwhelmed and confused and really don’t have a clue what to do – ASK! Ask for help and ask the folks that seem to know.
Get information; get contacts, keep asking people, and telling them what you need. Eventually, someone will have an answer or know someone that does.
Use the Internet, research, friends of friends, the caseworker, the doctor, and the nurse. Keep asking. Don’t accept no for an answer and keep asking. This was super key for me to find good care and what steps to take next.
- Who, what, where could you find help if this happened to you or a loved one?
- If you aren’t in this situation now, what could you do to plan ahead?
SELF-CARE - I learned the importance of self-care.
Self-care is taking care of you. It makes sense that if you don’t take care of yourself you will run down and be of no use to those you care for. I "got" that intellectually.
However, caregiving is overwhelming and often leaves the caregiver feeling like they don’t have 5, 15, 30 min. to take care of themselves. I know that for me, it was the difference between being able to care and running away unable to care or worse having a flare of my psoriatic arthritis.
Things I did for self-care. Eat healthy, exercise, take walks, book a hotel, keep in contact with friends and family, rest when I could, ask for help, and pray often.
- What can you do for self-care – 5min, 10min, 15min, and 30min.?
- How do you de-stress or relax? Is it healthy for you?
For those who are 24x7 caregivers day in and day out- you are my hero and angels. I have no idea how you do it and keep yourself sane and healthy. I imagine it’s a labor of love but it’s got to be bone weary exhausting. I’d love to know how you do it and any tips or suggestions you’d like to share.
I hope you find this useful or thought provoking, I’d love to hear from you. Click like, share, comment, or email me.
If you are interested in coaching from me, I’d be honored to embark on that journey together with you. Check out my website to contact me. If you want more life, change, loss, or business tips register for my newsletter.
PS. For those that wonder what the worst month ever was. The month after my first husband, Kris, was killed in a motorcycle accident. In my 40's, I was widowed to raise two angry teenage boys. THAT was the worst time ever. I can see how it prepared me for this journey and gave me inner strength.
Wishing you Peace & Blessings,
Bold Fulfilled Business & Life Coach – Transition and Loss Specialty
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