A caregiver’s journey…
Sometimes we feel so alone in our lives… no one seems to give a damn about what happens to us as caregivers, what kind of toll it will take. It really doesn’t help much to hear others say inane nonsense about “earning stars in our crown in heaven”, or “earning brownie points with God”, or “God knows you’re one of his angels”. Not when you’re exhausted, lonely, aching physically and emotionally, and feeling cut off from the world. A crown in heaven sounds nice, but what about some help down here? What hurts most is that it’s frequently those who are supposed to be closest and dearest to us who turn away first and are the most indifferent.
Many caregivers find that the polite inquiries from our friends (“How is your mom/dad/aunt/wife/husband? Oh, that’s too bad. Did I tell you what little Johnny did yesterday?”), with only polite interest in the answers, can leave us feeling even more isolated. It hurts when your friends do this to you. It hurts even more when your family is so indifferent to the issues you deal with. They can sound soooo sympathetic, and soooo grateful that you are there to take care of Mom and Dad, of the aunt or uncle or grandparent or sibling who needs such care. But when it comes to sharing the burdens, giving you a break, or helping to keep track of the medical or financial records, well, gee, they’d love to help, but just look at the time, gotta go, but sure are glad you’re there to take care of things! And forget about any inquiries into your own well-being!
During the last days before my mother’s death, I spent most of every day and all of every night in her room with the hospice nurse. My heart-sister came every morning, while I went home for a shower and change of clothes. I don’t think I spent more than 4 consecutive hours in my own home during that time – so, no, I didn’t get much sleep. My heart-sister stayed there with me all day, but I sent her home every night to get a good night’s rest, grateful beyond words that she would be returning the next morning.
More on A Caregiver’s Journey Includes Loneliness…
My biological sister, however, called once a day to ask about our mother. When I yawned over the phone and mentioned that I had only had about 3 hours’ sleep total in 3 nights, she said she “appreciated” that I was staying with our mother. Then she changed the subject to something that happened to her at work that day. She never once asked how I was doing, what I was feeling, nor did she offer to help, although she was only 30 – 45 minutes away.
My heart-sister and husband were with me as I watched my mom take her last breath, almost exactly 6 years ago. My biological sister, who should have been there, who should have been supporting me and allowing me to support her, decided it was more important that she go to work at her contracting job.
Yes, that felt like a complete betrayal. It felt like she betrayed me AND our mother – and the whole concept of our family. It created a chasm between us that we have never bridged, that we will never try to bridge. It also made me feel very lonely. If not for my heart-sister, who had no biological bonds with Mother, but did have very strong bonds of love between them, I would have been so alone.
Yet, I am not alone, because so many caregivers know this feeling of having been deserted, forgotten and undervalued. And every time I hear from one of them that they are so worn out and burned out, I want to hug and hold them, offer to help them, send them on a vacation. Because I’ve been there, and know how they feel. I know that they aren’t really alone… except with their families.
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Here are some personal responses …
Thank you! I feel as if I might have written this, while making very few changes – except neither of my two (retired) sisters would call to ask about our mom. Years of caregiving Mom … I finally stopped offering updates via email because it took more energy to write updates with details and any changes. I figured they would eventually ask if they really wanted to know, but they never did, nor did they ask how I was doing. (Exhausted, deep in debt as my business was on part-time-pause). I was very sad for my mom, and I had sadness for the ones who were missing this sacred journey of a loved one’s end of life. My brother, who was in poor health, helped as much as he was able. He was loving and emotionally supportive. It has been 13 months since Mom passed, and my brother died suddenly almost 5 weeks ago. The grief and shock sometimes feels surreal. And, I’m just beginning to realize the anger present about my sisters’ lack of attention and caring for our mother, and not a lot for our brother. People grieve in different ways. I understand that. But, I’m challenged to understand absence of love and compassion. So, my work now is to learn a new normal, honor and allow the grief and anger, and find my way to forgiveness and peace.
I too experienced a similar sense of aloneness for many years prior to my mother’s death. I seemed to see her needs in a way that no one else in the family did. They were concerned with practical matters, externals if you will, when my mother was suffering more from isolation, disconnection and loneliness than anything else. Who cares if her clothes aren’t the latest fashion and her hair is done if she’s dying inside? Not me. Since that time I’ve come to accept that everyone doesn’t care in the same way. Some can’t care because they are too frightened to let deep feelings in. My oldest sister stayed busy with her work. At first I was angry, then I came to understand that she could just not face the fact that my mother was dying and leaving her. Rather then jump in the middle of those emotions, she chose to keep occupied with other things. After my mother’s death I watched her take them out a little bit at a time, to unpack her grief and I’m pretty sure she suffered regrets in the process. Her grieving process has been prolonged. We all handle our emotions in different ways. We all have to answer for our choices only to ourselves and to the Universe. The most important thing in all of this is that we did what our hearts called us to do, and seeking out and finding the support of “heart sisters” is God’s gift to us.
My sibs not only don’t ask how I’m doing, they never once have told me they appreciate that I’m doing the caregiving. That just pisses me off.
I can so totally relate. In fact just recently my BFF kicked me upside the heart. Its not may social events I get to go to. I’ve got only my disabled son to sit with my husband, and he can manage only a short time. But my BFF is hosting a BBQ at home/fireworks at the park thing. I thought this would be perfect, as I could bring my husband with. She’s well aware of my predicament in not being able to attend things like plays, dinner at nice restaurants. When I accepted her invitation to include my husband, I politely added “if it’s OK with you.” I NEVER expected her to give several unvalid excuses for him to not come. I really don’t know how to react. I told her I’d be good with the truth, but apparently I’m not.
I hate the polite comments that really don’t mean a thing. I’ve realized that I don’t have any close friends, as none have been here for me. And family? Ha! Ugh, hugs to all of us here
I can understand this. Even the people at church no one understands. They are cordial, but no one ever calls or stops by and we only see people on Sunday.
I think there should be a new term for what caregivers experience because I dont believe that just loneliness covers the package of emotions we experience, especially when you are caring for your spouse
I understand the feeling. Great article. When we first realized what was happening to Dad and the care he needed my sister and I shared care for him and assisted living did the rest. Mom spent a lot of time in and out of the hospital and rehab at that time. We needed more help as the months went on, and my brother just wouldn’t step up. We needed to split up time. I’m disabled and my sister is a caregiver by profession. So she’s always busy taking care of someone else’s parents. My brother would not help us. He would visit. That was how he helped. So he didn’t tell us when he was coming. All he did was get in the way of our routine with dad. Better that he wouldn’t come. He’s better note. He finally understands what’s going on. So now we hear about how much he cries from him and his wife. (Like he in this alone)
There is not one single person in my life that even remotely cares now. I will admit, my own friends are all going through awful things now, health, caregivers themselves, etc so I cannot blame them but my hubby has large family and not one of them gives a darn anymore. Do not call, do not visit, do not care. Breaks my heart for him even though he never asks about them anymore.