A Caree Grieves the Loss of Being a Caregiver

roseMy wife and I have talked a lot lately about her excruciating sense of loss as a caregiver.  For 26 years, we were caregivers to one another, to family, relatives, friends, the clients we served as social workers, the abused and neglected animals we rescued.

Adele was a social worker for 40 years before she became disabled. She also had a Master’s Degree in Health Education and did all her doctoral courses in that curriculum but because of the demands of her job, she never finished her Dissertation. She specialized in dialysis social work, psychiatric social work, gerontological social work, hospice and palliative care social work, and oncology social work.

For 22 years, she was the Director of Psychiatric Services at one of the county medical centers. She designed an inpatient psychiatric unit, helped in the design of the medical center’s Assisted Living Community and trained staff. In her last position as a dialysis social worker she achieved the highest award granted to an employee for going above and beyond the call of duty. She loved her clients and her clients loved her. Her clients with substance related problems were awestruck how this social worker with pumps and pearls knew so much about the street. I’ll never forget a client who had turned his life around with Adele’s help, cried and hugged her the last day she could no longer work because of her disability.

During the course of 26 years, we helped relatives in medical crises, doctor’s appointments, etc. We  assisted her aunt and uncle who were able to afford home health care stay in their home until they peacefully passed away at home. We both kept my mother-in-law  in her house with a reverse mortgage until she passed away peacefully in her own home at age 92. She had round the clock care while we both worked full-time.

Over 26 years time we rescued about 12 dogs and about 12 cats. Most of them we kept as our pets and adopted out the rest. They were our children. We shed tears of happiness and sorrow as we think of how special each one of them were to us.

Most of all, Adele says that she misses doing the things she used to do for me. Her sense of pain and loss is very palpable. I tell her she still is a a caregiver to me. She says all the time what she wouldn’t give to be a caregiver again like the way she mentioned above. I have to remind her she still is–just in a different way. Perhaps more importantly, I listen with empathy to her as she reminisces tearfully and with deep pain. She would be the first one to say, likely, that much of who she was as a person was about someone who cared very deeply about the suffering of others–not in an unhealthy selfless way.  She had a great capacity to balance her care of others with care of herself as well.  She asked me to blog about this topic because she thought it might help others here at Caregiving.com.

Adele would like to tell her story and experiences as a caree–especially if it will help others. We decided that I would write or record what she shares and our dialogue about the experiences she relates. Coming soon…

13 thoughts on “A Caree Grieves the Loss of Being a Caregiver

  1. Avatar of Roaring MouseRoaring Mouse

    Bob, I am looking forward to seeing what you post next. But I am learning about the desire to continue giving part. I have been asked to volunteer my time at a spinal rehab center. As both the medical and societal part only the people here I run into would understand that part of me…I am looking forward to sharing what I learned on a personal level as well as the resources I have amassed in my journey. – RoaringMouse

  2. Avatar of BobBob Post author

    I hear you RoaringMouse loud and clear. Sometimes ideas come up for me or in my interactions with my caree which I seem to think may be relative. In doing so, I may be in reality missing the major idea of reflecting on my own experiences with caregiving or resources I’m learning about. I’m still very much a child learning to crawl here as it is difficult to get a chance to spend more time. I guess out of my neediness, I’ve focused a lot on my experiences. I want to become more familiar with others experiences so I can truly learn more from member’s wisdom, experience, strength and hope. In addition, for me to express my supportive and empathy as well.

  3. Avatar of DeniseDenise

    Hi Bob–The losses are so hard, aren’t they? The loss of purpose can be so difficult to navigate. Who am I if I’m not the only who helps and takes care? The ability to help provides such a profound purpose in our days–its absence can leave a huge hole.

    Adele’s life remains purposeful. Maybe it takes a new shape but it retains its power.

    Bob, it’s wonderful to have you here with us. You are a joy. :)

    Reply
  4. Avatar of BobBob Post author

    Thank you very much Denise!!! Yes, the losses are very hard. Also, with all she has been through, she said “I feel like just a shell of a person.” We had lately been talking a lot about the losses mentioned above. Today,and more importantly, we talked about how we are still in the dark about definitive diagnoses and prognoses. We both believe she was affected deeply by her third back surgery after which she developed a staph infection of the Cerebral Spinal Fluid and had 87 Vancomycin treatments. The orthopedic surgeon who did the surgery denied there was any problem. After she was transferred for inpatient rehab treatment to a sister hospital was it discovered by a neurosurgeon’s consult (About two days after the transfer), that she had a CSF leak. Fortunately, an orthopedic surgeon at the sister hospital was willing to open her up, as the surgeon who originally did the third surgery said he saw no CSF leak that the neurosurgeon did even though it showed on an MRI done before she was transferred. When the surgeon opened up her surgical site, he found CSF leakage and a severe staph infection which ultimately resulted in 87 IV vanco mycin treatments. She does have a Parkinsonian Movement disorder and we are going to have that further evaluated. Unfortunately, recent bacterial infections have kept us from getting her to doctor’s appts. She is still in an isolation bed at the nursing home. We’re going to schedule a treatment team meeting and work toward her getting the further diagnostic and treatment interventions she needs once the infections have cleared up. We are making the most of our time together. A transfer to a closer nursing facility where I beleive her care would be better is still in the wings. Sorry this post is such a jumble. It’s truly wonderful to be here Denise. I can’t begin to tell you much it is helping me. I wish I had found the site a long time ago. Nevertheless, I’m grateful I’m here now. Blessings :)

  5. Avatar of Roaring MouseRoaring Mouse

    Bob, Forgive me please as what I am about to say should occur without saying…My hubby had staph and MRSA (and the list goes on….) so many times I lost count. Where ever your wife is at please make sure that medical staff are cleaning their hands both in and out of the room and that they are disenfecting the table, the nurses station, the bedrails and the remote. Essentially anything that your wife will touch more then 5 times in a day. Little one used to yell at the nurses down the hallways when they left the room because they didn’t do this. Saying prayers for calm & strength for both of you.

    RoaringMouse

  6. Avatar of ejourneysejourneys

    Bob, I am so thankful for this post. Your voice and Adele’s are both extremely valuable, and you are both teachers (and, in that way, caregivers) to us. Adele’s sense of pain and loss resonates with me because I see it in my partner, who has such a difficult time coming to grips with her MS. I see how her disability threatens her sense of identity — and how much she wants to contribute however she can. Bless you and Adele for doing so much for so many and for so long — and for the continuing gifts of your stories.

  7. Avatar of BobBob Post author

    RM and EJ: Thank you so much for your replies. I’m on my way to my other support group and wish to comment more on your posts as soon as I can. Sincerely….Bob

  8. Avatar of JoJo

    Bob, I took look forward to hearing the views of a caree. My own caree, my Mother, is not as vocal due to her worsening dementia (more to come in an upcoming post). I can relate to the concern over changing roles. Due to my position in the family, I anticipate a decade or more of caregiving for one family member or another. I’m a widower already, my children are soon to be young adults, caregiving is fast becoming my life. I embrace it but can’t imagine what life without caregiving would be.

    My other selfish reason for wanting to hear the other voice is because dementia runs strongly throughout my family, both sides Father and Mother. We don’t get cancer, we live forever (late 80′s, 90′s) and we lose our minds. I’m just shy of 50 but given that my wife is dead already and my extended family history, end of life discussions are a simple matter of fact in our household. I know that I will find Adele and your voices insightful especially as I contemplate my own journey ahead.

  9. Avatar of Sunshine=Sometimes

    Hi Bob,
    I can only reiterate what has been said. You are an angel. You are such a gentle soul. It resonates in your prose. Your wife is the fortunate one to be on the receiving end of this love you share. And I know you feel the same about her. I was reading the e-newsletter for our site and saw that perhaps sharing something of our days made our days more bearable. Please keep in touch. We love to hear from you. I agree with you too, Bob. Finding this site and connecting with other friends and members makes the caregiving bearable. And we learn a lot from each others’ experiences. Say whatever you want, Bob! Honestly. We learn and grow from your insights! God bless you and your wife Adele.

    Reply
  10. Avatar of BobBob Post author

    I have to say RR that the facility is woefully inadequate for the most part in making disinfecting her room, most likely the nursing station as well, and I’m sure many staff do not wash their hands in between patients. I’ve brought this to the attention of the administrator. He states he will talk to staff and there are inital short-term changes and then it is back to business as usual. Some staff are excellent. I have had it with the current facility. When I recently made a complaint to the admisnistrative director about an aid’s negligence and bad attitude he “blamed the victim”, saying that my wife required a lot of care and many of the staff are burned out from taking care of her. In reality she is experiencing substandard care to put it mildly. I recently reported the facility anonymously to the State Dept.of Health as staff were refusing to feed my wife. The investigator said they would follow up and due a site review. They will select random residents–one being my wife, so they cannot tell where he complaint came from. She cannot feeed herself because of her Parkinsonism. She has lost more weight which she definitely cannot afford. I’m looking into having transferred out of this facility into one whose report card is good and is closer to where I’m staying right now. Thanks for your prayers RR…..Bless you!!!

  11. Avatar of BobBob Post author

    Thank you so very much EJ. I’m really moved by what you have said. Adele has felt that she has lost her voice and her “self” because of her medical condition. In dealing with the challenging physical aspects of a disability, the psychological impact can understandably get lost. Then there is sometimes the fear of relating the psychological part, I think possibly because it makes all the medical problems that are so serious, so frighteningly real. I feel fortunate that my training and experience helps me to be aware of the bio-pschosocial-spiritual aspects of severe; chronic; life-shtreatening illnessses. I hope EJ that your partner in some way can see that she still, too, can give and that we don’t have to be bound fully by the limitations of our illnesses in many cases. Prayers your way. I’m glad that Adele’s and my journey is meaningful to others. We are all students and teachers to each other.

  12. Avatar of BobBob Post author

    Thanks Jo. My dad had Altzheimers Dementia the last 6 years of his life. I’ll never forget how, about mid way through, he played his last gig with his band. We did have to help himw with setting up his drums. But hen he went on automatic pilot and you wouldn’t know he had dementia. What I found helpful was to treasure what ever came out of his mouth. Sometimes funny and other times you could feel the sadness behind it. I’ll call it listening with the “third ear”; i.e sometimes experiencing what is behind the behavior or what is said. I believe that dementia patients–even furhter along, still have a sense of what is going on. I’m fortunate that my wife can articulate what she is experiencing….sometimes it is very hard to hear because it’s so painful. I’m sad to hear you lost your wife. I grew up with many of my relatives dying young. But I could never have fathomed our situation happening. We always thought we would be caregivers for the rest of our lives. Well, I guess God means it for good…Blessings to you Jo

  13. Avatar of BobBob Post author

    Dear Sunshine: I cherish very deeply what you have said…you are an angel for saying them. Yes, this site makes caregiving bearable as we give to one another. I will keep in touch. Your feedback means a lot to me. God bless you and keep you on your journey….Bob

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