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Home > Blogs > Caring for Parents > Caregiving: The Beginning of the End

Caregiving: The Beginning of the End

dovesWhen my dad was diagnosed with invasive bladder cancer and colon cancer in May of this year, just 3 ½ months ago, the urologist told me he thought my dad would do okay through this summer and fall and start having problems as winter began. While that didn’t seem like very long, it still seemed like we had all the time in the world.

My dad weakened a lot over the weeks, and plans we had made to take him to see the new fire station (he’s a retired battalion chief), and to the casino were postponed when he didn’t feel like going on the days that were planned. I had no idea at the time that the time would never come.

When my dad first began having the hallucinations, we weren’t sure if they were caused from dementia, which was possible but unlikely due to its quick progression, or if perhaps his cancer had spread to his brain. At first, the hallucinations were just every once in a while. But two weeks ago he was up walking around and actively hallucinating 24/7 on Monday and Tuesday, causing me to sleep with one ear open at all times, and having to get up at least once every hour to calm him down, give him meds if it was time, and put him back to bed, just to hear him up again in another hour wandering around. He slept part of the night Wednesday night and I was relieved to get a little bit of sleep. However Thursday and Friday we were back to 24/7 and a constant vigil, and ultimately Friday night he fell. I found him face down in the hallway, uninjured, but completely unable to help me get him up without assistance from my husband.  After a full week of me not sleeping for more than two hours at any given time, I called hospice in tears.

The hospice nurse suggested that we transfer him by ambulance to their hospice house where he could spend a few days trying to get his medications figured out in order for him to sleep at night so I could care for him again at home. By the second night there, however, his health began to plummet and the realization came that he was not going to be leaving the hospice house for home. Ever. The doctor said that death was very near; he suspected within the next day or two. We kept a constant vigil by his side, but as of my writing this, a full week later, he is still there, alive but struggling.

It seems like the only thing harder than being a caregiver is having to NOT be a caregiver and watch your loved one struggle to pass on. I feel guilty for not being able to allow him to die at home, but relieved that there is such a place as this hospice for him to remain. The facility is beautiful, as are all the employees.  But while caregiving in the home is sort of a day to day survival, this has now turned into an excruciating wait, not wanting my dad to die, but not wanting him to continue to live this way. He is rarely awake and alert and most of the time when he is, the fear in his eyes just destroys my heart. I hate to have him be sedated constantly, but I certainly don’t want him to lie there being afraid.

So we sit with him, hold his hand, pray, read, talk to him, talk with each other, and reassure him that we are there. We have all said our goodbyes, told him we will miss him and it’s okay for him to leave us whenever he’s ready. But apparently he isn’t ready yet. As difficult as it has been caring for him 24/7, at least I had what seemed like some control of things. This watching and waiting is even harder.

So, my blogging days are coming to an end, certainly a whole lot sooner than I anticipated. I’ll be sure to let you all know when it happens. It could be tonight, or he might hold on another week. I’m trying to just get through each day, loving him and trying to let go.

About Cindy

Avatar of Cindy

10 comments

  1. Avatar of Denise

    Oh, gosh, Cindy, it’s such an odd time now. It’s fast but slow–slow but fast. You want to stop the moments and yet you don’t.

    I’ve learned through caregiving about the definition of “home.” We think of “home” as a place, a location. I really believe the saying that “home is where the heart is.” Home isn’t a location but it’s a love. Your dad is home because he’s with you. He feels and knows your love. Your love means he’s home. :)

    I’m so glad you’re keeping us posted. Know we’re with you.

  2. Avatar of Kathy

    Cindy,

    You have my heartfelt prayers for peace and rest for your body, mind and heart as well as for your father.
    If you are interested in watching a video presentation by the woman that wrote the hospice pamphlet “Gone From My Sight” I will be happy to post the link for you. It’s a much more in depth discussion about our loved ones last days and it brought me so much more understanding and comfort about the process of dying. I have seen it a couple of times and oh how I wish it had been available to me when my mother and my grandmother passed away.

    You are doing all you can for your father and have a safe and caring place for him. You can’t ask for more than that. Hospice will work wonders at keeping him pain free and comfortable. It would be extra nice if they could do that for the loved ones keeping vigil but they can’t. They can offer excellent support through the process and even afterward so please utilize it for yourselves.

    Prayers for you all.

    • Avatar of Cindy

      Kathy, yes, I would definitely like the link to the video. Thanks!!

      • Avatar of Kathy

        @Cindy
        I pray you find some comfort and understanding as you watch this. It is lengthy but in my opinion well worth it.

        • Avatar of darciejane

          @Kathy, I would like to thank you for bringing this video to our attention. Yes it is long but very worth it. Anyone with an elderly or terminally ill caree will find a wealth of detailed knowledge here. It is not depressing. It demystifies the dying process and shows how medical interventions can really mess things up. Hospice is clearly the way to go in those last few months/weeks. I’m looking at things in a new light from watching this.

          • Avatar of Kathy

            I had made this comment before that as a society we are so ingrained with “do something” that in the end days of our loved ones, doing the most loving and compassionate thing by doing nothing feels so wrong. That’s a shame, we burden ourselves with guilt because of it too.
            We are never ever really ready to let our loved ones go, no matter how much we think we are prepared. Our hearts still take a hit, and it hurts. Standing on the edge is scary.

  3. Avatar of Sue

    My thoughts are with you. My dad is also in hospice and although we were told two weeks, it has now been three and he is still much the same. It is difficult but it is good to have them comfortable and in a place where people are compassionate. My dad is at home with a 24 hour caregiver and my mom. But, it is still hard for my mom to face not being able to do as much for him. I hope you find comfort in the process and being with your family.

  4. Avatar of Pegi

    Sue, my heart goes out to you. We just went through this with our much loved mother in April. It was the hardest decision we ever made, when she had to leave home. You are fortunate to have found a facility, it helps to give some comfort. The hours at his side, the vigil you keep; he knows he is loved. He knows you are with him. The wait is excruciating, and I hope and prayer you will find the strength, comfort and peace you so dearly need. As Denise said, you are not alone.

  5. Avatar of ejourneys

    Cindy, my heart goes out to you as well. I am thankful that you all have this time with your dad, as difficult as that time is, and that hospice is doing its best to provide comfort and care. I wish you all comfort, peace, and much love.

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