A reflection on Dad’s passing: A difficult road was made a little easier with support

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I shared with you recently that my father had, among other issues, Alzheimer’s disease. His journey came to an inglorious end in late March after we had moved him to a nursing home. He was there only 12 days when I got the call from the nurse at the Iowa facility saying that while she could be wrong, experience told her he was dying. Three hours later, with his 90 year old wife at his side, he indeed succumbed.

It was a whirlwind in the last months. His congestive heart failure made him weak and he stayed in bed for most of most days. His dementia made him confused and often uncooperative. My sister and I flew home just two weeks prior to his death to visit the prospective nursing home and assess my mom’s sense of readiness. At this point, he was beginning to have accidents of the bowel and while the four of us scrambled to clean him up, I knew I would leave in a couple of days and my mother would be left – as she had been – alone to cope.

Three days later she called in a panic. He was hallucinating and agitated, wanted scissors or a knife to attack the bedclothes… there was something in them. She was afraid to get into bed with him. Two days later the local hospice nurse – a hero of our story – came and told Dad the doctor wanted him to get more nursing care and he meekly, if feebly, complied, though the next day, he tried to escape.

I’m sure my mother felt whip-sawed. In a matter of months she went from intense and increasing care demands to the brief but stressful role of executive caregiver and then lost her husband of 68 years.

So often during this journey, here half way across the country, I felt like I was in a fog. And so often I had the benefit of sitting with one of our wonderful program staff to talk about what was going on. They reminded me of things I already knew but often couldn’t see while in the midst of trying to counsel my mom and deal with my own experience.

Social workers sometimes talk of “normalizing the experience,” and I thought of my mother. This was the only Alzheimer’s patient she knew and he often behaved in difficult ways. For our team, there was really very little they hadn’t considered or discussed before. It didn’t make the problems go away, but it made the journey a little easier. I very much appreciate what our folks do and the sound counsel they provided my family.

Remember, if you need help making the journey easier, any time day or night, you can call us at 800.272.3900.

6 Responses

  1. Elaine Corriero says:

    Thanks, Uncle Bill. For everything. ~ Elaine

  2. Angie Carrillo says:

    I often wonder if my messages about my journey as a caregiver help others. Your post confirms sharing does help all of us understand a bit more what to expect because it is from someone who has lived through it. Bless you and your family.

  3. Lisa Rose says:

    So sorry for your loss, Bill. I wanted to reach out to you at the Summit at Mt. Hermon but it was a busy day and our paths never crossed. I, too, lost my Mom in mid February and know what you are going through. I completely agree that the strength and encouragement provided by your wonderful staff makes all the difference. You are fortunate to work with such great people – and I appreciate them as well. You all do the best work – and I will forever be indebted to you all. Thanks for sharing your story.

  4. Karen L. says:

    I am so sorry for your loss. I lost my mother about a year ago. She was 91 and had advanced Alzheimer’s Disease. Your story resonated with me. Even with all the knowledge and resources that I had about the disease, it was still important to for me to be able to talk with others about the later stages of the disease. Caring for a parent with AD and losing them has been one of my saddest and most difficult life experiences. I am now a volunteer on the Alzheimer’s Assoc. Helpline and am happy that I can help and support people coping with AD.
    I am very grateful for your leadership at the Association.

  5. Josenaldo says:

    These caregiver affiomatirns are great! Caregivers definitely need to have a good outlook on life so they would also make a good impact to their patients. Caregivers can also get the supports offered by technology to ease their worries and lighten up their loads.

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