My Multiple Experiences With Hospice & My End Of Life Plans

My mother-in-law died last week at 87 years old. Thankfully for her she did not have a prolonged illness or downward spiral but the last two months of her life were lacking in quality and hospice was called in the last week of her life. Whoever created hospice is a genius. The services they provide to families in their time of need are fantastic and offer a great comfort to the patient. The people who serve as hospice workers are angels on Earth.

Having said that, I don’t think hospice is what I necessarily want, but it is most likely what I may end up with. In my mother in laws case, her time in hospice was short, but the few days that I helped take care of her convinced me once again, that I prefer NOT to go this way if possible. Hospice is a wonderful way to be surrounded by your loved ones, but the hospice workers only come 2-3 times a week. Your loved ones must care for you 24/7. In this case, this meant that my sister-in-law and I were awake and jumping through hoops trying to make her comfortable, cleaning her up, administering her medications and watching her deteriorate. This only lasted for four days but it took a toll on us.

If I thought my situation would only last four days for my husband and family members then I probably would not be so hesitant to die at home using hospice services. My Mom also died in an assisted living facility with hospice services from Early Onset Alzheimers and hospice was there for 60 days. I stayed with my Mom for nine months before she died and lived in the nursing home with her and slept on the floor. The situation is entirely different when it is an Alzheimer’s patient and in her case, she did not go quickly and quite frankly had an agonizingly long and painful death. Alzheimer’s patients lose the ability to eat and swallow, toilet, etc. The last few weeks, hospice allowed me to give her morphine as needed but the length of time it took for her to pass away took a significant toll on my own health (I had/have a heart problem and seizures), and I honestly thought I might die before her. I don’t want to be a burden to my husband and family members like that.

After my Mom died I was a fish out of water. I had spent nine years taking care of her and had lost my own identity. I still worked full time but didn’t know what to do with myself during my spare time. Still grieving her loss, I volunteered with a local hospice organization and was assigned to two hospice patients who had no family or visitors and was with them when they died. These people also did not go quickly, nor do I feel they had any quality of life in the time I spent with them.

Euthanasia issues and concepts word cloud illustration. Word collage concept.

I have been very open about my desire to have medical aid in dying (MAID) also known as death with dignity. I spoke about it very openly during my interview regarding Dying with Dignity with Deborah Kan from Being Patient. Trish Laub, also mentions me in her article “Words Matter: Discussing Death with Dignity”. As a patient with Early Onset Alzheimer’s and a heart problem, it is very likely that I will deteriorate slowly just like my Mom. As Trish Laub states in her article “Euthanasia is performed, and medication administered, by a trained professional with explicit consent and is illegal in most countries, including the United States. Assisted suicide is a process during which the patient plans for administering a medication to themself. Death with dignity, also referred to as medical aid in dying, allows terminally ill adults to request and, after being deemed qualified and mentally capable, receive a prescription for medication that they may choose to take to bring about a peaceful death”.

I am NOT suicidal. I do not have a death wish. I LOVE my life, and if you read my other blog posts my love for life is on full display. I would just like the opportunity to choose how I die so I don’t have to suffer or be a burden to my loved ones. I know medical aid in dying is not for everyone. I get that. But it’s my choice. Unfortunately, it is not one I am allowed to make because in the United States they do not allow people with cognitive disorders to do it in any of the nine States that have Death With Dignity/Right to Die. So I have been spending an inordinate amount of time researching other locations I can do it including Switzerland (not looking promising because I would have to do it when I am still cognitive), and the Netherlands which does allow Dutch citizens with dementia to do it (I’m trying to find a doctor that may do it for people who are not Dutch citizens). I also purchased a book called “Final Exit” which explains ways you can take your own life (not sure I can do that) and the “Peaceful Pill Book” which may help you do it. This does not appeal to me. I do not want to do it in a clandestine manner and sneak off and do it. I would rather have the advice and counsel of doctors or an agency to assist me when my quality of life deteriorates to the point that I no longer know my husband or loved ones, and am not enjoying life.

I really wish I didn’t have to spend my time doing this. I just planned my funeral, purchased my urns, and got all my trust, wills, advanced directives updated and made plans to donate my brain. I want to enjoy the years I have left without worrying that I will be a burden to my family (even though they say they don’t mind….I mind!). My goal is to get all this difficult planning stuff done so my husband doesn’t have to do it and I am 98% done……with the exception of dying with dignity.

If anyone knows of any other resources I can look into (I have already spoken to Final Exit Network), please let me know. I am also planning my worst case scenario which is evaluating assisted living homes near me and choosing which one I want to live in when I reach the point that my husband can no longer care for me when I am a burden to him.

Not today, Alzheimer’s , not today! I still have a lot of life to live!

9 thoughts on “My Multiple Experiences With Hospice & My End Of Life Plans

  1. I do not want a slow death.
    I do not want my family to suffer for months while I fade away.
    Since helping terminally ill people die is illegal in the U.S., I will find my own way. I have many medical issues and believe that those will cause my death before the dementia.
    I am not suicidal. I love my life and the people in my life. If I had my way I would live until I was 100 or so. That will not happen due to all of my health problems.
    I cannot bear the thought of putting my family, especially my wonderful, caring husband, through months of me passing away. I do not want to end up hooked to machines.
    My will and all legal documents are already written. I hope my wishes are followed.

    Like

  2. Hi Melissa. I am so sorry you are going through this. It seems so unfair. There are 9 states that will allow people with terminal illness to die, but Alzheimer’s is not one of them. If your’reinterested in talking sometime just write me and we can chat. Take care.

    Like

  3. Hi Kelly!
    I was born in 1961 too, as was my childhood best friend who also lives with Early Onset. I cared for my Mum prior to her death last year with Alzheimer’s. Hence my interest in your blog.
    I also do not want to be a burden on my family when my health wains. I support MAID in Canada. No doubt you are familiar with this relatively recent federal law. They are still working out the kinks involving dementia, mental illnesses and underage illnesses. In fact I am scheduled for a Zoom meeting later this month with an update on this process as a result of governmental delays since COVID-19. You may be interested in attending. I suspect you can google the details. If I can help, just let me know.
    I have only recently discovered your blog. Thank you for your service. I send prayers, strength, hope and love to you, your husband and family🥰

    Like

    1. Thank you, Debi. I am sorry to hear about your Mum and I understand your desire to not be a burden as well. Its a tough road to go to watch your loved ones die like that and also take a very difficult toll on our physically and emotionally. I am aware of the new law in Canada but at this point I didn’t think dementia is on the table. I have a google alert set up regarding anything related to MAID so I will get updates for anything that is published. Please keep in touch. I hope you stay happy and healthy and do not get diagnosed with this horrible disease.

      Like

      1. Hi Kelly!
        Life has been a whirlwind since you replied to me last month. I am finally catching up. I would like to know how I flag communication on your blog (I think it’s a blog? I am new to most of this.)

        So yes, I attended that Zoom meeting presented by Dying with Dignity Canada. If you were there you would know what I now know. Just in case, in summary;
        1. Bill C-30 was passed in 2016 (? My notes aren’t here; and yes major memory issues!). They studied the 3 areas (dementia; mental illness; and minors) for 2 years then a report was compiled by 3rd party.
        2. After study and review, an amendment, Bill C-7 ( I think it’s called Bill?) was proposed with substantial bi-partisan support. That bill waiting to be voted on when Covid-19 closed us down and anything pending was canceled.
        3. Dying With Dignity (DWD) went to court and won that C-7 must be legislated by December ??. It is expected to pass.
        4. When I wrote last time, my understanding is this bill would address dementia being included. I was a little off.
        The amended legislation includes allowing Advance Directives, that means that the initial approved decision for MAID is upheld whether the person is cognizant, under the law, at time of death. That sounded like dementia was covered to me.

        After attending this event and asking the $64 Million dollar question, I think the answer is “maybe yes, maybe no”. When talking about criterion in the Bill, one of the presenters referenced a ‘physical’ versus a ‘mental’ illness. I asked if dementia was considered physical or mental? The answer was that hadn’t been confirmed; in essence… a bit wishy washy. I haven’t been able to follow up on any of this. The implication I heard was that it would be decided on a case by case basis. And of course DWD is there to support the process. I think they are doing a great job!

        I relocated from Ontario (although originally from Cape Breton NS) to Vancouver Island BC just a few years ago. I met a lady early in that move that was attending a meeting I went to. It was evident she had Dementia/Alzheimer’s, as I was told. Lovely lady; then she wasn’t there anymore? Her husband told us, before too long, that she had died with all her family around her; and her last words were that she “wanted to go like this, while she still remembered them all” 😢. This was almost 3 years ago. I asked her husband how she managed DWD, based on my interest and my Mum (that they knew). He said that she had another medical issue also.

        Jelly, I would be available to chat any time, if you like. I have not been diagnosed with any dementias at this time though my almost-59 year old friend has. I do have frontal lobe brain damage. I was evaluated in 2007 at the Baycrest Brain Health Clinic in Toronto. I was really-evaluates in 2015, for concerns with my memory function. It did not seem normal for my age to my husband nor me. They did not identify any dementia concerns. So I continue writing my notes & lists; telling people I meet if they tell me something important and I don’t remember, it’s not that what they say isn’t important to me, it’s just I have some major memory issues; re-reading books, re-seeing mObie’s etc., in short order as I never remember the full story. I have added you and your family to my daily prayer list today. Perhaps you would be better served LIVING AND ENJOYING LIFE. I had the broad strokes of what Mum wanted after she died. It was very healing for me to make the plans and take care of business. Difficult, yes, but my last gift to Mum that I enjoyed. Your family may feel the same. God bless all of you 🙏🙏

        Oh by the way, I have ordered and expecting delivery today of Dr. Bredersen’s new book, “The End of Alzheimer’s”. That’s something else I found and have done some studying with. IT’S FASCINATING to me the success he has had in California for at least 4-5 years with the “Bredesen Protocol” holistic treatment. Alzheimer’s diagnosed people returning to work; improving cognition; AND LIVING‼️ I saw him presenting in Australia in 2017, where they are doing the same thing with success. I can’t wait to read the book. I’m already shouting the good news; and I’ve provided information to my friend Trish’s husband. I can send you links to stuff if you want.
        Sorry it’s so long. You don’t have to post. It’s really for you.
        Hugs, Debra
        Debra.taylor.hague @gmail.com
        Cell: 647-233-1751 (it’s not glued to me but you can leave a message and I’ll get back to you)

        Like

      2. Hi Debi, I am sorry it took me so long to get back with you. I have been enjoying life. Thank you for info about the Dying With Dignity effort in Canada. I have a google alert set up to get information regarding all of it. As far as following my blog, I think there is a way for you to hit an icon or something that says follow when your reading my blog. I’m not sure how to do it though. I am now done with all the difficult planning stuff for the end of my life (with the exception of finalizing nursing home arrangements when I need them). My doctor’s advice, and my plan was to get the tough stuff out of the way and then just enjoy from this point forward which is what I am doing. I will email you my email address should you want to communicate further. Thank you. I hope you havce a good Fall season and stay safe.

        Like

  4. I am so sorry you are going through this. I stumbled across your blog a few months ago and I catch up when I can! From following your posts, I can tell just from reading you are very TYPE A, like myself! I have a very difficult time relaxing and my comfort zone is to be going 100 miles an hour. Maybe because if I am not, I would have to sit alone with my thoughts and that is scarier than being/looking busy.

    I finally decided to slow it down and quit my job. I have had a hard time “enjoying” my time as the NEED to go go go is the way I am wired. If your time is as limited as you think, SLOW DOWN. Pouring yourself into all of this is a distraction in one way but pulls you away from family, friends and enjoying experiences in life you should be taking the time to enjoy while you are still able to do so.

    Your family will choose to TREASURE the times with you instead of remembering your pouring over all this information which sounds incredibly time consuming. Slow down and enjoy your days. Your family loves you and will not mind the care, just as you did not mind it with your mom. You actually MISSED it when it was over. They will feel the same….

    Liked by 1 person

  5. Thank you Kelly! It was lovely to hear that you are enjoying life and your tasks are complete. I suspect that your husband is most happy just spending time with you 💖

    Thank you for your email. I will be in touch…. And yes, that thing popped up today when I was reading your post so I am now following you!

    I too am a Type A trying not to be. I had been medically depressed for about a year until recently, after Mum’s death. It’s a medical challenge I’ve lived with since I was diagnosed at 22 years old. Now better, I am trying to “balance” life with proper care for myself also. I have a long way to go! My new mantra: “Be Slow. Be Calm. Speak Softly.” The more I practice through a day, the better I get. Progress not Perfection!

    Enjoy your day Kelly 💞

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s