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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
thank you very much sunnyflower. I go through stages , mostly I feel numb and my mom and I get in lost of fights because she doesn't feel like I understand how serious her condition is , like I should be MORE upset. but my mom has been sick since I was very young and I feel bad but both of us are kind of tired of it all. It affects my quality of life and well I just don't know if I should take it more seriously and act like it is an emergency because a lot of times my mom talks about not wanting to "go on" anymore and asks if I would forgive her if she did have to "Go" I don't have kids yet and I want my mom to live to be a grandma, but I also don't want her to live with this quality of life she has right now:/. How do you build your faith?
I have a spiritual program, but don't feel directly connected with my higher power very often. Thanks
Replies to "thank you very much sunnyflower. I go through stages , mostly I feel numb and my..."
@jessamyn Regarding, "How do you build your faith?, many members find healing and solace in faith. You may wish to join this discussion:
- How Spirituality Can Help Stress https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/
You also mention that palliative care has been suggested for your mom. Palliative care is more appropriately named Symptom Management care or Comfort Care. It is not exclusively care meant only at the end of life, but is specifically focused on managing pain and other symptoms that affect quality of life. It is a holistic approach dealing with physical symptoms and emotional and spiritual needs as well, and can involve family members, not just the patient. I encourage you and your mom to look into it.
On the one hand you feel maybe you should take your mother's pain, "more seriously" but on the other hand you feel numb to it because it is all you have ever known. It must be extremely difficult to hear your mother talk about suicide. I saw in another post in a different discussion that you have attended Al-Anon for 11 years. This leads me to believe that you and your mother have a difficult relationship aside from her "pain." Did I get that right?
What a heavy load you're carrying. I understand how your mother feels. When suffering lasts for a long time and completely takes over one's life, it erodes the will to live. Living turns into existing, and when we exist at that level long enough, hope disappears.
I've been at that place. I existed in a very deep depression for more than 5 years, and actually did make suicide attempts during that time. Over the course of those rough years, therapists and doctors and medications and my family and my faith were the lifeline that extracted me from the hole. And they continued to get me to a safe place where I wouldn't fall back in. I still struggle, more than 15 years from when I spiraled out of control.
Do take her thoughts about wanting to die seriously. Has she ever said what her plan was? If she's thinking about taking an overdose, you will need to keep medications locked up, and be diligent about making sure she takes them (to be sure she's not hoarding them).
Spirituality can be a powerful resource for you. Are there things that have helped you, such as meditation? If so, maybe you could tell me just what meditation means. There are many methods, some that are great and some that can be harmful. From all you've said, I can see that you understand the need for self care.
I have to stop writing now, but I promise you that I'll pray for you as you deal with some difficult issues.
I pray that you will have peace of mind and heart. You are loved by the one who created you.
Jim
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@jessamyn
Hi there, my wife's progressive neuropathy began 6 years ago. I am her only caregiver. It's becoming more and more of a full time occupation. To use a runner's analogy, I am learning that this is like a marathon rather than a sprint. When you run a sprint you give as much as you can for the entire run, 100% output, as much as is possible. In a marathon you have to pace yourself, you have to keep going but DON'T put in all you have for most of the run, otherwise you won't do well and maybe won't even finish. As a full time caregiver who will likely be doing this for many years to come, I have to realize, that just like in a marathon, I have to pace myself. Which means:
1) don't get down on myself if I don't have full blown empathy at all times and in all situations
2) being there is what is the most important thing, regardless of whether or not I am putting out 100% all the time, which I can't
3) making sure that all the REQUIRED needs are being met always, addressing the extra needs are gravy, which I DO want to provide but need to realize I might not ALWAYS be able to
4) I will have failures (like losing my patience) and the only thing to do is learn from the failures and move on, just don't beat myself up too much, and hopefully I will do better next time
To generalize, the bottom line with all of these is to be kind to oneself, just as much as being kind to one's loved one; we are human and can't expect to be superhuman, we just need to do the best we can. A lot of the love that we have for our loved ones is evidenced by the fact that we are there for them. When our loved one comes to know this, it is a tremendous comfort for them, even in times that are stressful, having that confidence that the caregiver will always be there gives them a tremendous positive lift or benefit.
This is my own set of feelings about this from my limited experience so far. Kindness, to yourself as much as to your loved one, is first and foremost the most important element in caregiving.
Best, Hank