Stopping medication

Posted by pcolunio @pcolunio, Sat, May 16 8:59am

My husband has decided to stop his water pills.
He has MSA-C. This is a form of PD. There is no cure for this and no meds to slow it down. The disease is progressing to a point that we now have more equipment for him in our home. A PT person is coming twice a week. I now have to sleep in a different room due to his request. I spoke to our family doctor and was told that it is going to take many weeks before his major organs start to become effected. If this were me I would think I would want my Husband of over 30 years to be beside me.

If he takes the water pills he spends all day going to the bath room. Not good. Truth is that there is only little change in the retention of fluids. He says he is tried of taking pills. I don't blame him for feeling this way. But this is hard form me. He has told me he wants to die. I feel like there is a fork in the river and a part of me is drifting away and I am lost on this new wide a fast river.

Please have strength to get through this. Reach out to everyone for help. You are stronger than you think but this is an extremely difficult time for you. Prayers that you get the help you need…

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@pcolunio Would your husband agree to taking a liquid form of his water pill, as it would be easier to swallow? Have you as a couple been able to have those difficult-at-best heart-to-heart talks of what lies ahead for both of you? Keeping your rudder in the water to guide you through this period is crucial to your own mental stability. Do you have a faith community you can reach out to, or close friends, to help support you nearby? Has his doctor been apprise of this new decision to stop medication, so he can refer you to hospice? They are a wonderful resource!
Ginger

Liked by lioness, jeanne5009

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Hello @pcolunio I read your post with interest as it reminded me of several points in time while my wife was on her journey with brain cancer.

While I know every patient and disease are different, as a caregiver I noted some similarities between your situation and mine in what I struggled with as a caregiver.

In my wife's case she made all of her decisions for her care based on her profound desire to always place quality of life over quantity of life. She decided to pass on several 'options' in her care based on her choice of quality. It was not always easy, but it was her choice and I worked hard to understood her perspective during this incredibly difficult time. Often times when I had trouble with some of her decisions I reminded myself how harsh life must have been for her when she awoke each day confronting her own coming death.

The other thing you said that struck a chord was how little, if anything, stays the same during times of caregiving. Chronic diseases begin to run our lives as caregivers. We find ourselves living lives we never imagined and making adjustments we never before considered. We are called on to react to each change and try our best to manage in new and uncharted territories, sometimes daily. No doubt it is daunting and some days just about unmanageable. In those unmanageable days I'd say to myself, over and over, 'love conquers all'.

I am wondering how old is your husband?

Strength, Courage, and Peace

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@pcolunio When my next door neighbor was put on hospice they helped her through also When it comes to that time ask them what ever you need and they will be there for you as well as your husband . I use to work in hospice and they will help you and your husband through this difficult time . Bless you take care of yourselve also . . Remember your husbands wishes . God will see you through HE always does . Keep the faith

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@pcoluno. How is your husband doing? Is her taking his water pill? An mostly, how are you coping with the isolation and your husband’s condition?

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Thank you to all who replied to my post. Sorry it has taken so long for me to respond.
He still is not taking his water pills but his body is maintaining . His mood have gotten a bit better but not much. Heart to heart talks are no longer a thing for us. It gard for him to speak. I manage by having my daughter and her boyfriend living with us. I am very grateful for them. I spend a lot of time in the yard.
I hate all of this! But I do believe that God will not give more than I can handle. Right now my goal is to get my husband to the finish line. What God has in store for remains to be seen
Thank you again for all of your support!

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Hello, may I say first that there may be alternatives. I have given up tablets for epilepsy (a condition I had from1953-85). I immediately improved after I gave them up in 1969. I was put on an antipsychotic in 1973 and told I would have to take them for the rest of my life. I got better when I applied a set of practical solutions to my 'diagnosis'!I have taken no medication since 1995 (given me in my coffee without my knowledge between 1980 and 1995!). I have been living a perfectly normal life for many years. Diagnosed in 2011 with myelofibrosis, I refused medication and instead have regularly taken liposomal vitamin C (which I make myself) and a number of other supplements. My consultant says, "Whatever you are doing keep on doing it. It is working". I have kept stable and am not in danger though I do still have a swollen spleen which I am working on by taking broccoli sprout powder in my liposomal mixture as recommended by a contact on this site. I also have prostate cancer, diagnosed in August last year and am seeing a Medical Herbalist who is a great help. I am not a fan of chemical medicines it is a rather narrow approach to 'disease' (not health, you understand!). There are always three good ways of approaching any problem. This is a known phenomenon! Do look online and compare what different sources say. When confused ask someone who is well versed in both the condition and natural health. First, don't give up. 'Shop around'! Good luck, Roger

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@pcolunio

Thank you to all who replied to my post. Sorry it has taken so long for me to respond.
He still is not taking his water pills but his body is maintaining . His mood have gotten a bit better but not much. Heart to heart talks are no longer a thing for us. It gard for him to speak. I manage by having my daughter and her boyfriend living with us. I am very grateful for them. I spend a lot of time in the yard.
I hate all of this! But I do believe that God will not give more than I can handle. Right now my goal is to get my husband to the finish line. What God has in store for remains to be seen
Thank you again for all of your support!

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@pcolunio Thank you for giving us an update. Several of us have been wondering how things are going. Even though it may be difficult to have a conversation with your husband, I believe you will feel good to say what you need/want to say. How wonderful to have your daughter there, and have her support. Time spent in the garden is also therapeutic; can your husband join you for fresh air and a look at the flowers and greenery?
Ginger

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