We all fear what we don’t know… It’s natural… Yet, you were not afraid when Spring became Summer. You were not afraid when Summer became Fall. They were natural changes. Why should you be afraid of the season of death? ~Leo Buscaglia, American author, professor, and motivational speaker
I really must apologize for being so long absent from this wonderful blogging community.
Back in December, my mom went to the hospital and was there nearly 10 days before being transferred to a facility in town for rehab. She was there until early March, when they deemed her ready to resume life at home.
I had my doubts, but nothing I said mattered. Medicare insurance regulates much of the care for our seniors.
At first, Mom did okay. But when she found it challenging to navigate all our stairs and prepare light meals for herself, I took over. It wasn’t long before she climbed into her bed, refusing to leave it for anything but bathroom visits.
That meant I was carrying a tray of food up and down stairs three times a day. Fetching glasses of water for her pills. Answering the door when home care nurses, aides, and therapists arrived.
The longer she stayed abed, the worse her mood grew. She was afraid, and I didn’t know how to make things better because I was afraid for her.
You see, her diagnosis wasn’t good. Cancer. And she opted not to pursue surgical or diagnostic therapy because of her age and weakness.
Being “on call” 24 hours a day, seven days a week has exhausted me in ways I can’t fully grasp. No one — from the local electrician or accountant to the President or the Pope — has to put in that many hours without a break.
They shouldn’t have to.
Nor should I.
Besides the physical strain, I’m shouldering the emotional burden of realizing I’m losing her. And that one day, I’m going to be an “orphan.”
My only sibling is nearly 800 miles away, and she and Mom go at each other like oil and water. Playing peacemaker falls to me — another chore I didn’t ask for.
Recently, Mom reluctantly agreed to hospice, something that can support both of us in this difficult journey.
I’ll take all the help I can get.
You know, there are folks who gush over how “rewarding” caregiving is, but I’m not one of them. It’s hard, often thankless, work, and most times, I’m barely managing to tread water.
Out of the blue, I have fears I never had before: How is this stress affecting my health? Are we doing right by Mom in the long run? Am I irreparably neglecting my work, my friends, and Monkey so I can tend to Mom’s needs?
I’ve learned the importance of managing my fears by getting lost in a book; immersing myself in music, exercise, prayer; playing with Monk; and seeking the companionship of friends.
After a month on hospice, Mom decided to try immuno-therapy for the cancer. She revoked hospice and is rehabbing locally. I’m relieved to share the burden of her care with people more qualified than I, but I fear the treatment will be hard on a person her age … and might not be successful.
We will see.
So, forgive me for not visiting your blog-homes as often as I’d like and know I’m thinking of you and will return when I can.
Musings by an ND Domer's Mom 
Debbie, please know that we all understand your absence from blogging, so no worries.
“I’ve learned the importance of managing my fears by getting lost in a book; immersing myself in music, exercise, prayer; playing with Monk; and seeking the companionship of friends.”
You are so right about that. The important thing right now is to take time to take care of yourself (mind, body and spirit) and recharge when you can.
I feel you because I went through this with my father in 1993, and my mother in 2012. Both who eventually had hosice care – my father was actually in a hospice care center, my mother had hospice home care.
Know that my thoughts and prayers are with you, dear friend. Sending you LOTS of love! xxxxxxxxxxxxxxxxxxxxxx
You went through this, too, Ron? I’m so sorry to hear that — I wouldn’t wish this on anybody. Seriously! It’s incredibly hard work, particularly when you’ve got so many other things demanding your attention. Perhaps that’s why my folks put their folks in nursing homes as they aged and became too unmanageable.
Thank you for your thoughts and prayers — I’ll always be grateful for the kindness and support this blogging community provides! And I’ll be around to visit each of you as I can. xx
No apologies necessary! That kind of intensive caregiving is such hard work, both emotionally and physically. Best to both of you during this difficult period. And hugs across the country from Maine.
Aw, thank you, Laurie. You know, this quote from Rosalyn Carter perhaps says it best: “There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” To me, that sums it up perfectly!
It certainly does. I think most of us would love to live an active life until we reach our 90s and then just go in our sleep. Unfortunately, that seldom happens.
Going in one’s sleep is definitely the ideal! Wonder if that’s why so many old folks opt for surgeries where the outcome is, at best, iffy??
Oh Debbie. What you are dealing with is the all time most stressful thing to have to do. Especially without much help. Hospice can be a godsend. Just to have someone you can call and discuss options with. Not to mention all the physical work they can do too. BUT…given your mom has opted back out of that…let me tell you about our experience with immunotherapy. My husband is getting that treatment now. He doesn’t want it all over social media so I haven’t talked about it. But I will tell you that the side effects are pretty minimal. Every person is different, but for him, at least, it elevates his already existing aches in his legs but that’s about it. Sometimes a tiny bit of fatigue. Of all the cancer treatments I think immunotherapy is the least of the bad stuff. Do you have my email? Email me with any concerns you have along the way. Maybe we’ve experienced it too.
dawnkinster@gmail.com
What a comforting thing to tell me, Dawn — thank you! Mom has had two immunotherapy treatments thus far. The first one was wicked — lots of nausea, etc. (personally, I think she’d read the drug side effect profile and convinced herself she had ALL of the bad stuff!). The second one went much smoother (the doctor assured her that most people sail through with little to no bad effects, and I guess this time, she believed him). The mind is a strange and wonderful thing, right?!
Because she was in the hospital for some time, she was released to a rehab-to-home facility (and honestly, it’s such a relief knowing she’s properly cared for without my having to get involved). I don’t know how long she can stay, but I’ve got my fingers crossed!
I’ll be happy to save your email address — thank you!
I am so sorry you are both going through this Debbie. The strain and burden on you is palpable. I am so relieved to hear you are getting assistance in caring for your mother. No one should be expected to shoulder this type of burden unassisted. Sometimes the one being cared for forgets the strain 24/7 care puts on the caregiver and this is so frustrating. Sending you love and prayers.
You’re so right, Cindy! Mom doesn’t seem to have any appreciation for just how hard this is on me. She refuses to welcome my only sister, who’s offered to spell me off, and she vacillates when it comes to her wishes for down the line. Her mind is sharp and she’s not living in poverty — how blessed she’s been! Gratefully accepting all the prayers you want to offer up!
I’m keeping you and your family in my prayers
Thanks very much, Captain! I’ll always take prayers — most times, they help even when the person being prayed for doesn’t know they’re being prayed for (though it’s so comforting to hear you’re being covered in prayer!)
I’m so sorry you are having to bear this burden. Caring for someone is a double whammy of concern. For them and for you. You will be in my prayers for added strength as you navigate the path forward.
Thanks very much for understanding and sympathizing, John. Yes, it’s a challenging situation, made worse because I never witnessed caregiving firsthand. My folks placed their folks in facilities (for a variety of reasons), but my mom sure doesn’t want that for herself. I’ve done what I could, for as long as I could, but (again, for a variety of reasons), I’m done. She needs far more care now than I can give her.
Understandable, Debbie. Bless you.
Thanks, John. It’s much appreciated.
😊
Every situation is different, but every care-giving situation that requires the involvement of family members — that would be you! — is similar in one way: it’s an exhausting, sometimes guilt-ridden, and seemingly impossible journey. I watched my own mother become cranky as time passed, and then resentful of the situation she found herself in. Unfortunately, there was nothing to be done to change the fact that life ends. As I often reminded myself, someone else might have done things ‘better,’ but I did what I could. That’s all you can do; don’t beat yourself up over the things you can’t do!
Thanks for a timely reminder, Linda. I’ve often fretted that I haven’t been the “best” caregiver for my mom — there are just too many things I’m unable (or unwilling) to do. When we started on this path, Mom at least was able to do some things for herself. I won’t bathe her, for instance. I’ve encouraged her to have her bathroom refurbished, but she refuses. The mother-daughter relationship is fraught with challenges anyway, and this has only made things worse. Her staying on hospice would at least have given me a reprieve. Sigh.
I’m glad to hear from you, Debbie, and please don’t worry about not being around so much – we understand and will be here whenever you pop by. I know how exhausting and stressful these times are, and all you can do is try to make some time for yourself whenever you can – easier said than done. I hope your mom’s new treatment works, and I’m glad she’s agreed to let other people share the caring with you – it’s too much of a burden for one person to shoulder alone. Like you, I’m not a natural carer, but you know, your mom probably knows that and appreciates even more that you’re doing your best in a situation outside your comfort zone, even if she doesn’t say so. Take care.
Such soothing words, FF — thank you! Sis and I tried to encourage Mom years ago to plan ahead for her “later” years, but she preferred not to think about that. Now I’m afraid we’re going to have to make the decision for her — and woe betide us if we get it wrong, ha! I can rest comfortably, knowing I’ve done my best for as long as I could; it’s somebody else’s turn now.
This is a terrible burden for you and please don’t worry about us! You must take care of yourself, otherwise you won’t have energy for others. I hope you literally book time slots for yourself because they are equally (if not more so) important. Martyrs burn out! 😀
I’m glad you have Monkey to take you for walks, your music and friends. They are your oxygen, breathe deeply! ❤
“Martyrs burn out!” What a perfect reminder, Eliza — thank you. You’re right, of course. Those who refuse to take care of themselves at the expense of caring for others are practically doomed to regret it. I’ve read that severe stress takes as much as 10 years off a person’s life — talk about an eye-opener! And thank you for reminding me that Monk, walking, my music, and friends are my oxygen — I love that!!
You have the weight of the world on your shoulders now and not knowing how long you will have to carry it makes the burden even heavier. My heart goes out to you, Debbie, as I well remember the relentless stress experienced in the years of caregiving for my father and my aunt. “Fear of the Unknown” is an apt title for your post. Please keep trying to take good care of yourself as you muddle through this journey. Sending you healing energy and prayers. 💙
Thanks very much, Barbara. It’s always comforting to hear from others who have trod this difficult road before me … and survived. During the three-week period when Mom was on hospice, the carers learned I’d been doing this for nearly a decade — and they were appalled. No one, they assured me, should have to go this road alone for that long! Prayers are much appreciated!
What a tough situation! The last thing you need to worry about is keeping up with blogging. Take care of your mom (and thank goodness you’re finally getting some help) and take care of you. Being a good daughter doesn’t mean putting your own life on hold indefinitely. Praying for both of you!
Taking care of *me* has become a priority, Ann. Before Mom went into rehab, I was plumb exhausted — mentally, physically, emotionally. Caregiver stress is a very real thing, and nobody should ignore it. You’re right, in that you can’t care for another unless you care for yourself first. It’s like what flight attendants tell us: put that oxygen mask over your own nose and mouth first, and then tend to others!
I am sorry to hear about all this. Life can be so difficult! I will put all of you on my prayer list.
Thank you, Kelly — prayers are much appreciated!
No apologies needed!!! We all understand. I was my dad’s caretaker for 8 years all while being sick myself. Caretaking is a VERY difficult job!!!! The guilt for me behind the scenes is distressing. My dad was 96 and I thought behind God’s back…” when is he going to your house Lord?”
Then I felt bad again because everyone has the right to live their life. So I wound up asking God for more juice (His supernatural strength) to carry me through this to the end. And He did just that. But even that wasn’t over yet because I was the executrix which led to 2 years of more drama.
But I can tell you it is a long process with very little rewards down here. But when We get to heaven, God will remember what we’ve done, and He will reward us! Until then I prayed for you, my sister! And I know you’re doing that to. Hang in there XOXO
Hearing from someone who’s trod this path too (and survived!) is balm for my spirit, Tanya. Thank you! I do believe we’ll be rewarded for our caregiving when we get to Heaven, but oh, it’s such HARD work down here on Earth, isn’t it? I’m really not looking forward to the settling of the estate. I’ve told Mom a million times she needs to make sure everything is tied up just the way she wants it — I don’t want to battle with my only sister for years over STUFF!!
My dad did have a will and planned his whole end. But it was my sister who didn’t agree with it. I told my dad the same thing u said…not battling over stuff. But it still happened. If your sister is sweet as you I’m sure it will be OK. There is nothing easy about what you are going through. It’s all hard. I pray that the Lord gives you the strenght and wisdom you need. Even through all I went through, time has passed and good thoughts are in my mind and heart are in my heart now. I think about all the wise and funny things about my parents now. IT DOES GET BETTER! You must go this trial….but God WILL help you just like He helped me.
Thanks for your encouragement, Tanya — it’s much appreciated. Yes, sometimes it’s good to let a field lie fallow for a time, giving raw emotions a chance to heal before coming to major decisions.