When Annie looked up at me from her hospital bed and said, “Please take me home–I don’t want to die in the hospital.” With those words, Annie reserved, and deserved the right to die at home.

Annie had five core wishes when diagnosed with terminal cancer. One of which was dying at home, where she felt comfortable and safe. There was no way on God’s green earth that I would deny her that request. What’s the point of a terminally ill person having a wish list when dying, if the wishes are not followed by her loved one(s). There is no point!

As I sit here today almost five years post Annie’s death, I can still see her beautiful creation. She was a masterful decorator, and loved hanging wallpaper, mixing and matching beautiful colors.

Not much has changed in here since her death. If she wants to pop in and set in an old familiar chair, it’s still here and where it was. Turn a lamp on, no problem, it hasn’t moved either. Nope, I’m not saving the house for the day she mysteriously returns, but what I am doing is “loving her.” When I look around, I see and I feel the love. The thought that I had the privilege to be her caregiver until the end, and that she passed in our home, gives me a warm heart. You see, love doesn’t hurt, but the pain from loving can be very traumatic at the end. But I believe, and am convinced, that deep pain is best dealt within, “a house built on a foundation of love.” Our home was the most appropriate place for her rite of passage to occur.

What’s The Problem

From reading some recent articles on dying at home, it seems to me the authors speak more of themselves, and how hard it was on them, while lacking the total commitment to care for their loved one in a meaningful way. Annie’s care could be very difficult at times too, but I didn’t care. My commitment and dedication in making sure her last days or hours on this earth were as comfortable as possible, with her wishes being lovingly fulfilled, seemed to become my soul purpose for existing.

Simply put, life is about love and being loved, and if that is not one of your personal core values, care giving for a loved one dying at home is probably not for you. If you can’t provide exceptional quality care for your loved one, then by all means turn them over to hospice or leave them in a nursing home. What’s the difference? A dying patient will feel your love, or lack thereof. And I think that is a real tragedy. Everybody wants to be loved and they need to be loved until the very end. Dying can be a cold journey for a loved one, and when handled by a lukewarm caregiver loved one it’s probably even worse.

Recently I read a blog about why dying at home is not all that it’s cracked up to be. It’s a very good blog, but in my opinion does not address the true nature of love. What I saw in the blog was some useful information, but also chaos and guilt. And it was a tremendously successful blog. Why! Because it’s based on many truths, and speaks to how it is for many caregivers.

Anytime a loved one starts feeling like a burden to a caregiver, I can guarantee you things aren’t going to go all that well. The moment the resentment starts settling in, things go South from there. Chaos starts to set in, and form that point on their becomes a loss of control by the caregiver and the patient senses the chaos and reacts accordingly.

It Doesn’t Have To Be That Way

I like to think of care giving during end of life care as, separating the pretenders from the contenders, and then there is the champions which are those that love deeply.

If you’re a pretender and talk the talk, but can’t walk the walk, let the professionals handle your loved one. They’ll do a better job, and the loved one will be better off, as you’re probably going to muck things up anyway.

If you’re a contender, you will most likely have a sense of self-confidence and be up for the challenge. You will get tired, frustrated, aggravated, and question your own sanity at times, but you will do your best to help your loved one through to the end, and be somewhat successful. And my definition of successful is—was the loved one comfortable at the end and did they feel the love. If the answer is yes, you did a great job making the best out of a very difficult situation.

For those that have a deep love for the person their caring for, “you’re an Angel.” You may not do everything right, you will make some mistakes, but you will recover and whatever it is that you’re doing for your loved one, it will be done with selflessness, empathy, compassion, integrity, love, utmost of respect, and from the heart…And that’s as good as it gets. The loved one will pass over with love in their heart.

You’re the caregiver that pays attention to the little things. A dying loved one can be like a small baby, very fragile, and needs to be handled like one. Are the sheets under the baby wadded up causing the baby unseen discomfort. Is it hungry, does it need it’s diaper changed. Are the lips moist enough not to chap. We go to great limits taking care of a new born baby, why not apply the same principal to a dying loved one. Dignity in death is not a new concept, and we must not let it become a dying art form.

At times, over the first several months of Annie’s journey with cancer and again over the last eight months of Annie’s life, I had thirty five hour back to back shifts with only a couple of hours sleep in between. Did I cry, did I complain, did I moan, no! You know why? Because it was not about me, it was about Annie. Near the end of her life she’d say to me, “Bobby, you need to get some rest darling, you’re getting so tired.” I would simply smile and say, “Annie, I’ve got the rest of my life to sleep.” And that’s how love works. You’re locked into relentless care giving for your loved one which overrides the things that you consider not so important at the time, allowing you to keep on loving them through their darkest hours. In the end, death is so final. I’m so glad I stayed awake long hours caring for Annie, allowing myself more aware time with her. It’s precious time that once gone, you can never get back.

The Final Battle/Dying At Home

Twelve days before Annie passed, the situation in our home was so grim. Annie was really sick and suffering from internal bleeding. On that 12th day, Annie was sitting at the dining room table with me and her sister Lesley, when she started having a spontaneous bleed. The blood came from one of her ears, one nostril, and her gums, lips, inside cheeks, and throat. It wasn’t a heavy bleed, but it didn’t have to be. It was the shot across the bow, a warning, the countdown had begun.

Was I afraid, no! Was I sad, yes, I knew what it meant. I was heartbroken. Was there a lot of chaos, no! I took immediate action to control and calm the situation. I had 29 months to prepare for this event, which I knew was coming, just not when. From the early stages of her disease it became clear that Annie’s body would reject potential life sustaining infused platelets, which is one’s blood clotting mechanism. Her lack of platelets was causing this bleed.

Six days before Annie passed we went to visit her oncologist, Dr. Moore Sr. When he walked into the room he said, “Hi Momma!” Want the good or the bad news first.

(Note: Annie and Dr. Moore Sr. had a wonderful relationship. When he met Annie, he’d been an oncologist for 39 years, was a scientist, a senior member of the board of directors for the Leukemia and Lymphoma Society and knew blood cancer better than most. He absolutely fell for her kind and loving ways. It was kind of sad, he wanted so badly to save her, but knew he couldn’t. He told me privately in the third month of her cancer, she was one of the most difficult cases he’d ever had. Why, because as he said the day of her initial diagnosis, she should not even be here. She should already be dead. But here she was, presenting one challenging event after another. Annie was a sick lady!)

Annie wanted the bad news first.

He told her rather nonchalantly, with a strangely curious look on his face, that her platelets were “0.” She didn’t have any. (Normal platelet count is 140,000 to 450,000). Other than dying, it couldn’t get any worse than that for her.

At that point, I thought I had sat in on one of the most amazing conversations, or lack thereof, I’d ever heard. He just casually told her she had no platelets, and she took it in her usual gentle stride. For that moment in time it seemed like their minds were locked together like, so what! What else is new! I would have thought there would have a been a much stronger reaction from both of them. But that was not the case. It was going to be business as usual.

After a bit, he had a detailed talk to her about hospice, and then asked her what she wanted to do. She said, “I want to fight on.”

Before we left his office, he asked her if she wanted the good news.

She said, “Yes!”

He said, “you’re still alive!” With a huge smile.

With that Annie started belly laughing. In the end we were all laughing. Just think about it. The situation was very grim, but what else could she or we do. Pity party, cry—no! She chose to see the funny side of a really bad situation. Imagine, two and one-half years earlier we had two very successful small businesses, a nice home, with the metaphorical white picket fence, two nice vehicles, getting ready to retire, and in general life was treating us kind. When looking at the irony of the situation as it now was, it was laughable. Our life, our hope’s, and our dreams were now just an illusion.

So what did we do? What we’d done many times before when the situation was grim. Got on with our day! I can honestly tell you from the heart that we did not dwell on, or talk about the seriousness of her situation. There was really nothing to talk about, it was a non entity. No one could help her! She was now beyond anything modern medical technology could deal with. As her loving husband and caregiver, you can bet your whatever, that in my mind I was focusing on the possibility that at any time Annie could have a true unstoppable spontaneous bleed out, and there would be nothing I could do but hold her and love her through it. Imagine having “0” platelets and living in a body that was badly beat down, diseased, and broken from cancer. Bleeding was a nightmare waiting to happen.

Hospice was never really a consideration for me, nor was dying anywhere but home. The hospital put up some resistance to me on two different occasions, at the 10th month prior to her death and on that 12th day that I just spoke of. They wanted her on hospice in the hospital immediately. But I always fought back, using my knowledge and understanding of the situation as it was at the time, along with my love for Annie and her wishes. Those were potent weapons when dealing with such adversity.

The last thirty-three hours

It was at that point that Annie started spitting up bloody mucus. This was not a warning, it was a sign of impending respiratory failure. Once the lungs were filled with blood, it’s over.

Admittedly, I was now truly freaked out, scared for her, and for me. But she never saw that side of me. I stayed calm, and in everything that took place over the next thirty-three hours I was compassionately in control, until Annie died peacefully in our home.

And this is why we have to be careful and not paint dying at home with such a narrow brush. For Annie it was everything she wanted and went exactly as I expected it to. I know, I was a very fortunate man not to have this event come crashing down on us, and yes there was some chaos, but controlled chaos is not a problem. You deal with things as they happen. I had to take myself out of the equation, and always do what was best for Annie. And I did.

For a loved one, dying at home surrounded by loving family, is special. Dying at home should not be a privilege, it’s a rite. If hospitals aren’t a desirable place to die, and nursing homes are a crappy place to die, and dying at home with hospice is not all it’s cracked up to be—where can a person die in peace?

How about dying at home with a competent caregiver loved one, without outside intervention or hospice. If one has the fortitude, is a competent caregiver, understands the disease and what’s going on with the disease, knows what medications to use, throws in some unconditional love and the willingness to be selfless in all that needs to be done, “Bingo!” We have a winner! You’ll do a great job.

Yes, I’m a bit different, in that I really did love caring for Annie, and it showed in the presence of everyone that saw us. I was so proud of her for who she was, what she represented to others, her courage and strong will to live, which all made her an inspiration to other cancer patients. In her third month with cancer, the nurses at the cancer center and later the hospital coined the term, “Our little miracle girl.” People were in awe of her, and as one nurse said, “Her trademark smile.” She smiled through some tough times. She was never a burden to me, but caring for a terminally ill loved one or patient will never be easy. In fact it can be very difficult at times. But, I wanted so bad to keep her alive as long as I could, no matter what her condition was. Because I knew, when it was over, it was over forever. And almost five years later, I wish I was not having this conversation, and was still Annie’s caregiver.

After Annie took her last breath at home, her eyes popped open, and it was as if she’d seen the glory. When EMS arrived, along with the Fire Department and eventually the doctor to pronounce time of death, there was a consensus amongst them all—they were amazed, saying she died very peacefully as her face showed no signs of stress, fear, or pain. In a sense they filled out her “Customer satisfaction survey” for her. She didn’t suffer!

So I say to you. Dying at home can be a beautiful thing if handled by a competent caregiver, with some skill and tender loving care. I have no guilt, no regrets, and the only thing I would change is—the ending, if only for a moment.

View Annie’s online memorial.

You can read Annie’s Story. All proceeds go to cancer.

Written by Bob Harrison
Bob Harrison was raised in the heart of the Redwoods in the far northwest comer of northern California. The little town of Crescent City, California was located near some of the world’s tallest trees, with the west shoreline being the Pacific Ocean. Bob spent most of his time fishing the two local rivers where some of the finest Steelhead and Salmon fishing is located. He was also well known up and down the north coast as an avid motorcycle racer, winning several hundred trophies, and one Oregon State title. Bob graduated from Del Norte High School with the class of 1966, then spent a one year stint at the College of the Redwoods, before having a strong sense of patriotism and joining the United States Air Force. After three years of service, Bob met Annie, the love of his life, and they got married in England in 1972. Bob’s love of country pushed him on to what turned out to be a very successful career, retiring in 1991. Bob’s last military assignment was Wichita, Kansas, a place he and Annie decided to call home. Together they developed and ran two very successful antique businesses until the stranger knocked on their door and changed their lives forever; “Because of Annie.”

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56 Comments

  1. God bless may he wrap his arms around you

    Reply
  2. Yes, if thats the last thing you can do for someone, then we should. Seen the difference while diong inhome Hospice.

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  3. It would have been my choice for my boy, dying at home. Feels like yesterday that I had to say goodbye to my baby. He was surrounded with love in that moment just like his life.

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  4. Thank you for sharing. This was very important for me to read.

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  5. I was my wife’s full time caregiver she had als and I kept her home to the end. She just lost her battle with als. I can’t imagine her in a home or hospital

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  6. They die there n leave their spirits. Ugh.

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  7. When I’ve been very sick and considered where I wanted to be, I decided that for my family, I want to be in the hospital. I want my home to be where the happy memories are, not where people can envision me passing. It may not be comfortable for me, but I wouldn’t be living with that discomfort for long.

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  8. As a hospice house nurse I believe a great deal of people would like to die at home. However, I think that the caregiver would have a different answer. I see so many exhausted, compassion fatigued family members who are in way over their heads, even though they have “help” at home. To say no one chooses to not die at home isn’t true either. At least half of my patients choose to come to hospice because they understand that not only will they be cared for but their families will also be held up and treated as delicately as they are. Each situation is unique and therefore can’t be put in a neat little box.

    Reply
  9. suffered a brain bleed, I was by his side 24/7 the nine days he spent in the hospital and then the two weeks he was in hospice house, where he died after receiving wonderful care and consideration for me and my family. He had a peaceful death and my daughter and I were at his side. I feel blessed having been able to stay at his side the entire time. He was the most appreciative patience the last couple of years of his illness and we were privileged to be able to care for him. He is still with us in spirit and always will be. God bless all caregivers. I believe we get more that we give.

    Reply
  10. Thank you for sharing this beautiful service of love you provided for your wife with all. While I could not take care of my husband at home after he suffered

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  11. at the point we realized the direction she was going, we began planning to get her home per her previous wishes. She declined too fast and I doubt she cared to much at that point. I made so many mistakes I wish I could make up for but there is no rule book and they forgive us. They really do. Just as we forgive them when all is said and done. God Bless

    Reply
  12. My mother died of Alzheimer’s Disease here at home. There was never any question but that I would keep her home. Of course, she never became a danger to anyone. In fact, she never became violent. She did become bed-bound, stiff, completely incontintent. But she was absolutely the most loving person with her own wry humor to the very end. Caring for my mother was the hardest thing I ever did. Her death was devastating for me, but she died in a familiar place and knowing that she was loved. Even with dementia, she knew she was much loved.

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  13. I won’t let my mom die in a hospital

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  14. Yes, If that’s what she wants!!

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  15. Again, Bob, my story correlates with yours in so many ways. Harry lived 9 years after his diagnosis with throat and base of tongue cancer. He was in and out of hospitals many times. During that period of time. First a shunt for chemo. And a feeding tube to eat. Swallowing was impossible because food would go to his lungs and pneumonia would be the result. Of course weight loss. However, Jevity helped him regain his weight. Pneumonia happened 3-4 times each year until COPD started. Then 24/7 oxygen with the dreaded tubing as a tether for 50 ft. I was so lucky that he never complained about his condition. He was in the hospital when we decided together that it was time to go home. I had been his sole caretaker for the entire and wished to continue on thru the end. Although I was very surprised that his death came so soon. I was the luckiest woman around to be able to, and have the knowledge to, be his final person to see. He was totally coherent right up to the last minute. I stayed with the funeral director until the hearse left our home. He was at home, with me, and not at some facility. That was his total wishes for his life. He knew I loved him from day 1 until the last day 55 years later. A wonderful man was mine to cherish always.

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  16. I think that all people should be able to pass away at home. At home, they are more comfortable and all their family is there.

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  17. Both of our adored parents died in hospital,we had no choice.Dad didn’t survive heart surgery so was in ICU till he passed but we were with him till the end.With Mum her nursing home sent her to the hospital presenting with pneumonia ,unfortunately she had perforated bowls resulting in sepsis..my family and my sister’s family,including kids,partners all kept vigil on our Mum’s journey home.We talked,laughed,got angry,Mumeven wanted to talk to her 4 grandchildren and their partners alone..She slowly fell asleep and I am grieving still,my life has changed,but I feel humbled and still I am in awe that we were with her till she passed quietly and peacefully with us by her side.My sister and I also were allowed to stay with her when everyone left.We kissed,talked,touched her and bathed her body and wrapped her with love….

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  18. My husband begged me to let him pass away on his own bed in his own room it was the last thing I did for him

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  19. Beautiful story ❤️❤️❤️❤️

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  20. I promised my dad and we kept that promise! ❤️

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  21. I am a Palliative Care/ Hospice nurse I truly believe it is ones own choice and no one else’s! As long as symptoms can be effectively managed at home then I say sure however when the symptoms such as delirium, confusion or even pain can no longer be managed at home then maybe one should have a plan b which includes Hospice

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    • In Canada we have Hospice’s where end of life care is provided. It is different then end of life at home!

      Reply
  22. I think it depends on the illness of the patient and the ability of the caregiver.

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  23. My mom wanted to.we toke care of her.at home.im so glad we did.miss her.

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  24. everyone has a right to die at home or in a hospital. for the wife or care giver its not easy to care for someone at home.. and having done this for my sister I speak from experence.. NO ONE has the right to choose for the pt. its their last wish and should be given to them… this is were they want to be, were they are the most comfortable, most at ease, ….

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  25. by my experience nobody wants to die in the hospitals or care homes. Them last wishes are to take them home

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  26. This is a beautiful story but not possible for all. I am keeping my mom in her home through 6 years of very fragile health. I have recently called in hospice to help as I can no longer keep her awake long enough to get her to drs etc. She also got quick onset of dementia and can’t seem to help me move her at all. I’m not familiar with these awful scary hallucinations and confusion she is having. It came on suddenly. She is almost 91. We haven’t started the hospice care yet but I will oversee it and am hoping for some great support in doing the right thing. I still will give her medications she is taking now and feed her whatever she can swallow and drink. I don’t see hospice at home as not being loving and completely caring for mom the best way possible. I could not do this alone anymore. She doesn’t even talk most days. I’m trying my best and I’m sure somewhere deep inside her she knows that. She doesn’t even know it’s her home of 30 years anymore. My heart is broken but as you say it’s not about me.

    Reply
  27. It is a personal choice as long as the patient can make that sound decision/choice. They have legal rights and to deny them their last wish is to not treat them with the dignity as a human being they deserve. Is raising a child from an infant through their young adult years a burden? No, it’s a blessing. A child grows up being taken care of by their parents. When time comes for the ailing parent to ‘be taken care of’ by a child one of the siblings must make the choice to take care of their parent and give that parent the respect they are asking for. This becomes the childs blessing. Your parents took care of you during your growing up years, now it’s your turn to take care of your parents, aunts/uncles, etc., during the time in their life when they become dependent on others to assist them. It should not ever be thought of as a parent being a burden on the children to take care of the parent. The parent never thought it was a burden to have children to take care of. Therefore, children should never think it a burden to take care of their ailing parents. Repay the favor as a thank you to your elders. Even if you don’t get along well with them, it’s worth it for the karma your soul will reap in its eternal life.

    Reply
  28. All Request should be Treated with Dignity and Respect.Last wish is the Most Important one.

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  29. I dont want to die at home. I would never want to saddle my loved ones with that.

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  30. It comes down to comfort at the end. Where will our loved one be most comfortable, given whatever ailments they have. Sometimes home doesn’t have the resources to provide the badly needed comfort. But when it does, what a blessing to have a loved one who cares enough to take us home. Each case is different.

    Reply
  31. Yes it is if possible. Some people have conditions that make it impossible. You should have a choice.

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  32. Oh how I wish I had been able to read this while caring for my mum at home and before she died, it would have helped so much

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  33. As a hospital nurse case manager and former hospice nurse, I was deeply touched by the loving and very honest story Bob Harrison has shared. Thank you.

    Reply
  34. I wanted my father to pass away at home but with his dementia he was too violent to keep him at home

    No one wants to die in a facility like a hospital or nursing home

    Reply
    • My MIL is also very violent and must go into a Nursing Home. Its just way too much for a family member.

      Reply
    • Vickie Black and that is totally understandable

      If your loved one is violent let the professional staff at a care facility help out

      My dad attacked me in my sleep and then once again with a knife and then another time with a pair of scissors

      You got to keep yourself safe

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    • Oh I got the heck out of there ! Her Sons are trying to take care of her now, but its pure hell.

      Reply
  35. Beautiful reflection, Bob. Thank you so much for sharing the intimate details of your wife’s passing. I’m so glad she was able to die at home – her wish. Mothers who have babies often say, each birth is totally different – it’s the same with death. Circumstances are completely different in each situation, but love at the bedside is what makes the experience bearable whether people are home or in hospital, struggling to give birth or to die. Your words are very, very wise. It’s funny that I should come across your post this evening because I posted something a little bit similar myself about 5 minutes ago on my site. Have a read and let me know what you think. http://www.donnathomson.com/2016/10/national-caregivers-month-part-1-bullet.html

    Reply
  36. Some people aren’t fortunate enough to have had their loved ones be able to communicate what they wanted. In my case, my mother ended up in a nursing home due to a minor stroke that affected her thinking ability and speech. (She was already declining from dementia). The idea was that the nursing home could offer her speech and physical therapy until she could hopefully be strong enough to go to an assisted living facility. She never got strong enough and she ended up staying in the nursing home until the end.

    I think it was clear to all of us siblings that my mother was not happy there. I feel very guilty as I was my mother’s main caregiver. I would have liked to bring her back home, but in the moment, it’s so confusing to know what is right and what isn’t. And it’s very difficult to fight 3 siblings (one of them being my mother’s Power of Attorney for health) at a time when your mother isn’t thinking right and is just fighting to stay alive. It’s been over a year now and I still feel so guilty. I still break down a lot.

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  37. As a caregiver to my father as well as working for an in-home Hospice, I felt it was my job to respect the wishes of my father. No matter the opinion of my 5 siblings, the only thing that mattered was what he wanted. When the time came, he decided where he wanted to be. I think giving the terminally ill the last word is the greatest last gift you could ever give them.

    Reply
  38. Hi Paul. This article had nothing to do with anyone not dying at home for any reason and was not meant to offend. It was simply telling the other side of the story. It’s a given that dying at home for many is not a viable option. But, when it is, and it happens to be the loved ones last and forever wish, it should be granted–with all the love and compassion that goes into that wish. If it can be done, do it. If it can’t, don’t. For the ones that can honor the request, it’s truly a rewarding experience, and in my case left me with no regrets. Annie was never neglected, and got the love,care and attention she deserved. You won’t get that anywhere else on this planet.

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  39. We can only hope that at when its our time we have a angel on earth, which is what you are, to love and care for us.

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    • That’s ironic Dawn. I was certainly never called an angel, but the nurses would come into her room or to our home and consistently remark, “Annie, if I ever get sick I sure hope I have someone like Bobby taking care of me.” I loved–therefore I committed. I was her strongest advocate, and was guilty of ruffling the same nurses feathers at times. But they knew where my heart was, and I was going to do whatever it took to care for her. Just because they are nurses doesn’t always make them right, but they were good and very good to Annie. They cared for her, and I cared for them. Tuns of mutual respect.

      Reply
  40. I’m going to assume you didn’t mean this to be offensive. You obviously loved your wife and were a devoted caregiver. You were able to fulfill her request.
    I will not be so fortunate.
    My partner is in care and will die in care. Not because I lack fortitude, selflessness, understanding of his disease, competence, or love but because I lack the time, money and resources to be able to take care of him safely by myself. He was diagnosed with ALS 3 years ago and I did everything I could think of to be able to keep him at home. Unfortunately circumstances eventually made all of what he or I wanted irrelevant.He needs more care than I can provide and it will only get worse as time and his disease progress. Your implication that all we need is love, understanding and strength is facile and does a disservice to all of us struggling to do the best we can for our loved ones. You were lucky circumstances allowed you to do what you did and to be what you were to you wife, not all of us are so blessed.

    Reply
  41. Beautiful story! Thank you for sharing it!

    I agree with you. And I envy you.

    Reply
    • Thank you for your kind words.

      Reply

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