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!

5 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.

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  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.

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  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🥰

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    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.

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