Reading your stories, taking in this information is such a blessing and help, I can’t tell you. And it’s the most detail I’ve found so far re: dealing with the aftermath of being with a loved one with a terminal illness. Although there’s no telling when the aftermath will come in our situation, it feels like there are hands to hold here. Thank you, thank you Jean and Char. The site is beautiful to look at and I appreciate the large font. :-)

In December ’09 my radiant, loving, active, 77 years-young Mother had a seizure and we immediately assumed it was a stroke. No, it was a large brain tumor, grade IV glioblastoma. Surgery was “successful” but hit the motor strip/right parietal lobe hard and resulted in left side paralysis, heartbreaking personality change (including mood swings, aggression, and denial of deficits), and a journey through treatment and rehab attempts, falls, and repeated hospitalizations that have left her and our family exhausted, scared and – words can’t describe. Yet, she and my father, with the help of 24-hour caregiving at home (she requires complete transfer assistance…until the money runs out, then….?) are fighting for life like mad. Her scans have been clear since chemo and radiation.

After Mom’s operation, Dad let us know that he had been diagnosed with beginning vascular dementia, and that Mom had had falls, been dragging her foot, and been fatigued and sad for about four months prior to her seizure. Being incredibly independent and not wanting to burden the kids(!), they kept it to themselves.

I took four months off work and was primary caregiver until a fall off a wheelchair ramp ended in a wrist fracture. Now, after various half-week arrangements, I stay with my parents two days a week (an hour and a half away) and work three days a week. Music is a sweet refuge for both me and Mom…I bring my guitar and we sing together whenever we can, and she loves to see pictures and videos from gigs. My two brothers and I (and they’re each really helpful in their own way) have each had various stress-related ailments in the past 20 months, and we are doing our best to support Dad physically and emotionally. Mom in a lot of ways has had characteristics of a hospice patient since all of this began…visions, aversion to any change, not wanting to be left alone, sleeping a great deal (but not at night).

So we’re in this holding pattern until someone’s condition changes. Taking complete leave from work is in the future, we just don’t know when. The anticipatory grief is intense for all of us as we face the unknown. Mother is (and was) a larger than life Italian-American matriarch, the powerful center of our family, and we feel like a galaxy spinning out of control. We are drawing on the huge well of love, support, and humor that our parents have given us. It’s a sacred, raw, strange, and mysterious time.

I know we are forever changed by these experiences, and one thing that’s struck me is the compassion and vulnerability here. Hope to get to know you better.

And…thank you, Dan. [Fogelberg]

Carol S


14 Responses to Carol S – mother brain tumor, father dementia

  1. Carol S says:

    Still so moved by your thoughtful and many-layered responses as I return here after a very eventful year. Mother is in a care facility sleeping around 20 hours a day, Dad is in assisted living after several hospitalizations for falls, dehydration, delerium, etc. Your kind words resonated deeply when I read them, and It is good to return to them now. Much love and fun and blessings to you!

  2. Dean Beaty says:

    This website is enlightening. I plan to show this to my girlfriend whom I described as working at “Arden Courts of Bath Ohio”. My mother had a heart attack three weeks ago, My sister is dying from Cancer. I am the oldest of four children & I will be the last one left. I feel that I should have been the first in a traditional sense. The stories I hear daily are somwhat regressive at times. Others cover the scope of why they are in the facility. Occasionaly I catch a glimpse of light from a story that is humorous & sweet. I try to support the family every way possible & sometimes it feels like everything that can possibly be done is still far from enough.

    The best to be held is the effort made as we all grow older. For it is not the size of the step but the fact that a step is made foward towards the destination set for all of us in our path we each travel. Thank you for your efforts here & with PCF >(I have a situation that troubles me also).

    With warmth & a smile

    Dean Beaty

  3. Karen says:

    Carol, welcome and thank you for sharing your family with us. There is obviously so much love there between all of you. I took from your story a feeling of what a beautiful, loving and very lucky family to have one another. So glad to hear you and your mom are still enjoying music together. Music is so healing, so “mystical” to borrow Jean’s Dans description. My own intelligent, beautiful and formerly extremely articulate mom was so far into her dementia that she had lost all her ability to speak, but yet she still could sit down and play her piano and read the music for a long time; eventually she lost that technical ability to play but the amazing thing was she still would enjoy playing her own version of “Starlight Waltz” and all the others from her favorite book by compensating by following the music notes with her eyes and turning the pages as she continued on bouncing her fingers up and down on the keys and humming along. It was the dearest thing. It’s very difficult to see your parents start to fail, but they know you’re there for them and its a gift in life for you to be able to help them now as you and your brothers seem to be embracing it as. Looking forward to hearing from you more Carol, take good care, Karen

  4. Carol says:

    Just back into town late today, and to see your beautiful, profound responses is a great comfort. Thank you, Merci, Grazie Mille! {{{You!}}} I feel all warmed! A lot of heart wisdom to take in, so many striking images and reassuring words, am practically speechless. Also, not having (yet) too many friends who have hit this stage of life with parents, it’s easy to feel isolated. Not so here! I hope as time goes on that I can help, too. Thank you again.

  5. Melisa says:

    Hi Carol, I feel so much love when I read your story about you and your family. Your entire group of people are so true and honest. I am blown away. That holding pattern is something I am very familiar with. It is an interesting place to be in, not in a crisis, grieving when the real grieiving doesn’t need to start yet, scared, planning/not planning, wishing there were someone out there that understood, wanting those who “know” you to never leave. What is helping me in our patch of calm is that it is so important to me that each of the key people in my journey know how important they are to me (my Mom, Dad, boyfriend, brother, dog). I know that when the really hard parts come, I am hoping that there will be a little bit of stability left to cling to knowing that they know how much I loved them. When I think of your family Carol, it feels like a solid unit, a group of people who care deeply about each other. There is no better place in the world to go to than here on DLH and with Jean and with Char. Knowing they are here gives us a place to come in from the storm and put on some dry clothes. They understand. They care. I care. You care. Thank you for sharing.

    • Mary R. says:

      I understand what you mean about grieving when the real grieving doesn’t need to start yet. I’ve lost most of my family and just have my mom, who is in a nursing home, left. I’ve lost most of her already due to dementia, but I just want to hold onto what is left. I still find comfort in her presence. I am so scared of losing her but I know it is inevitable and I am already grieving for her and she is still here. There is no current crisis, but I know it’s coming and I am just trying to breathe and enjoy her during this period of calm.

      • Karen says:

        Dear Mary, just wanted you to know I’m thinking of you and your dear mom and sending you my best wishes that all is going well so far. You are such a loving and thoughtful daughter and she’s so lucky to have you and I know you feel so lucky to still have her. I went in to visit my mom late this afternoon and she seemed to be doing well still; she was her usual self, smiling and wanting to have snacks in the dining room while I was there. She let me trim her nails. She has a new roommate who seems to be having that condition of sundowning pretty badly and when I peeked back in the room to say goodnight after 8 PM, the roommate was still talking to herself outloud and was up walking around her bed and seemed very confused. I feel so bad for her and I think she just needs time to adjust to her new environment and I’m sure they’ll help her get on a good sleep cycle with the right meds. That can be a challenging problem sometimes in certain stages of dementia though. So that’s what’s going on lately at my nursing home. How are things going with you guys? Are you still thinking about moving mom or is she settling in? As you know, mo matter what the place looks like, it’s the staff and administration that often makes all the difference. So glad to hear you’re finally able to catch your breath and all is holding steady as she goes. Hugs, Karen

        • Mary R. says:

          Thanks Karen. I’ve decided to leave my mom where she is for now. I’m afraid that moving her would just cause her more stress. The care seems to be good and I’m sure some of the faces have become familiar to her, so I don’t want to rock the boat. She’s been pretty settled most of the time, but very agitated when I saw her last Thurs. We were able to get away for the weekend and didn’t get any phone calls, so that was a good thing. The R.N. for my mom’s area of the nursing home is very much on the ball and has a pleasant personality. Most of the N.A.’s are kind and I haven’t seen or heard anything that is upsetting, so I am keeping my fingers crossed. She often says that she wishes she could still live with me, but I think that she understands that since she can no longer walk, that is impossible. I’m glad to hear things are going well with your mom! Love, Mary

          • Karen says:

            Hi Mary, that all sounds really good and very encouraging. So glad you were able to get away for the weekend. It’s such a blessing that we can do that now and feel they are in safe hands and we are just a phone call away if they need to inform us of anything. Yes, fingers crossed always for continued safe harbours for our moms – definitely! Love, Karen

  6. Jean F says:

    Ah, Carol, I cried reading your story, thinking of your sweet brave parents, trying to get along on their own without “burdening” their children, and all of you having to watch your mother’s swift personality changes. What you said about it being “a sacred, raw, strange, and mysterious time” is so beautifully put.

    Part of the stress of caring for our aging parents is our resistance to change and loss. We want things to go on as they have indefinitely – we want our parents to always be happy, healthy and busy. Seeing them afraid, in pain, stressed, and immobile, and knowing there is very little we can do to help is unbearably painful. Somewhere inside we all know that this is the natural progression of life, that this is “right”. It’s just hard to accept because it feels so wrong. But if we can shift our perceptions and see this time as, as you said, a sacred and mysterious time, a part of life every human being must encounter if they’re lucky enough to progress to a wise old age, then we relieve ourselves of the additional stress of fighting the inevitable. The fact that your brothers help is wonderful (as you’ve probably seen from some of our stories, some siblings actually add to the stress and drama and create their own set of problems).

    I know it’s hard to look at what they’re going through and think how lucky they are, but your parents have lived long and happy lives, raising three fine children who love them and are working together to help them through this final transition. Other than dying in your sleep in the middle of a great dream, what a great way to leave this life.

    Change and loss – natural parts of life on planet earth. Some people are better at accepting change than others. No one is good at accepting the loss of a cherished loved one. So all we can do is try to make friends with change. All of us: those of us experiencing the changes in our eyesight, hearing, mobility, looks, memory, sexuality; and those of us watching those we love experiencing those changes. If we can do that, if we can embrace change and laugh at the ludicrous commercials with 20-year-old girls trying to sell us wrinkle cream and 60-year-old men in bath tubs in the middle of nowhere, and just try to be as healthy and happy and attractive as we can be FOR OUR STAGE OF LIFE, then we’ll have more of the wisdom and energy needed to face loss.

    Loss is final and unalterable. Once our loved ones are gone, there’s nothing we can do but learn to accept their absence. But until they breathe that last breath, we can help them navigate the rough waters of change. And we can stay healthier while we’re doing that if we can conquer our fear of change and realize that the waters aren’t rough because we’re all being punished for something. The waters are rough because that part of the journey is deep and sacred and raw and mysterious.

    We can keep the sails up and try to harness the wind and fight against the tide as long as possible, but by the time our loved ones have reached the other shore we’ll have tattered sails and possibly a broken mast. Or we can take the sails down and motor through, keeping an eye on our charts and appreciating our last days together and the beauty of life in all its wild, natural glory. Then, once our loved ones are safely on the other side, we’ll be better able to make our way back. And one day, when our time has come, the waters won’t seem quite so dark and mysterious, and the wind and tides will seem more like friends, guiding us on our way.

  7. char says:

    Dear Carol,
    I sat for some time with just that written, “Dear Carol”… what can I say to someone who has been thru so much in two years ago. You have completed an accelerated course in care giving , and received your masters degree. Using the love, support and humor your parents provided for you and your brothers, has gotten you here to us at DLH today.
    Yes, you are forever changed by the experiences, in a positive way. I fought off the reality of care giving for months, maybe years,(not sure some days were like months )… but in the end when the smoke or needles and meds, cleared, I realized I actually had learned something from my experience. You have realized that and written about it so beautifully. Your parents sound simply amazing, and when you referred to your mom as the Italian matriarch of the family, I thought of my dad, the male version of your mom.
    The holding pattern you are in sometimes can be maddening, and at times, will and can bring you relief. Try to snag those days,hours or moments for yourself, your down time, and sing your song of life. You have taken care giving by the horns and seem to be on the right course, without the use of a map, as this journey can and will take you to uncharted destinations.

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