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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Seriously Stressful Family Situation - Any Coping Ideas? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1338049664 Message started by Futurehope on 05/26/12 at 05:27:44

Title: Seriously Stressful Family Situation - Any Coping Ideas?
Post by Futurehope on 05/26/12 at 05:27:44

Well, I have a "presumptive MCAS" diagnosis and probably won't know for sure until I see Dr. Afrin July 9th.

In the mean time, I am in the middle of watching my mother pass on to eternity. I am not a nurse, and all the things associated with being very sick and dying is stressing me out to the max. It's even worse since it's my mother. I'm emotionally invested in making sure she's comfortable. I do have a sister who is available and supportive but who lives out of town.
My mother does have aides around the clock.

Any how, for all you others out there with MCAS, do you have any hints? I'm starting to get my "dizzy/woozy" attacks which I haven't had for years. I'm associating it with stress and poor fitful sleep.

So, other than prayer, which I do, do any of you have any suggestions to help prevent me from going downhill? Should I bother Dr. Afrin about this?
Thanks in advance.

Hope you're all having a nice Memorial Day Weekend.

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by texan1960 on 05/26/12 at 07:15:59

I am not sure I have any wonderful suggestions, but I am sorry about your mom, that is a tough and stressful situation. Make sure to take some time for yourself and get enough rest! Share your stress with others for example getting help from your sister when she can, talking to a grief couselor, or minister. Don't be afraid to cry! That's not much but I hope you get through it okay and don't be afraid to ask for help from others....its just a rough sad time.

Take Care! A Big Hug!

Kim

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by Anaphylaxing on 05/26/12 at 09:13:38

That is so hard I am so sorry.

For me good sleep is key and I would consider taking a sedating antihistamine or lorazepam to try to sleep if you've tolerated either in the past.

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by Lisa on 05/27/12 at 07:52:34

I'm so sorry Hope to hear of your mother's illness and her coming to the end of her journey and of your suffering through all of this too. Death is a fact of life, as much as birth and so many of the others things we experience - it doesn't make it any easier to have to go through it though. I'm sorry. :'(

Hope, strong emotions are major enemies for masto patients and to the mast cell. They degranulate it. You'll read on the lists as to triggers that they only put "anxiety", but I've found this not to be true. I've triggered from situations which left me very surprised or shocked. Being overly excited and that kind of anxiously awaiting something, this is also a trigger. Grief is another big one. And also the weeping and sobbing that grief causes will also trigger you. With a mast cell disorder, we MUST keep our emotions in check and always well balanced. It's not that you can't cry, or be excited, or go through a shock or surprise, but you need to have your meds on hand and try your very hardest to check your emotions and keep them under control.

If this is impossible, as it can be, then especially with grief, you must have some anti-anxiety medications on hand and be using them if necessary. I have heard Dr. Escribano say that this is what he will prescribe some patients and I think it depends on each case.

Yes, I do think Dr. Afrin should be told about this, as your doctor, and that he needs to step in for you with this situation. It can indeed start the snow ball rolling because our emotions, especially with just such a time as loss, grief and mourning, take TIME to regain control of them. The snow ball can get rolling and get overwhelming and when you have a disease which takes advantage of that snow ball, then it only makes sense to have meds on hand to help deal with it.

I don't know if you've had to face the death of a parent before, I was 24 when my father died from his aortic aneurysm, but I learned some important lessons - 1. one is that you have a RIGHT to grieve, you have a right to cry and that nobody can dictate to you the time which YOU need to deal with that grief. Be patient with yourself and don't let anybody try to force you to "buck up". More often than not those people are made uncomfortable by your grief and they are only trying to make themselves less uncomfortable. Everyone has their own time period for healing and you need to feel free from any pressure from others. You will heal and as long as you pace yourself and come to a place when you say to yourself, "Okay, this is enough, I must begin coming out of this" and then take determined steps to turn yourself back around, then you will not only have given yourself the time you need to heal, but you will also then take the steps to return to your normal life and outlook on life without too many scars.

2. Second is that grief is a private experience. It's intimate and personal even amongst siblings and loved ones. We all grieve differently and we all must find out own way through it at out own pace. More often than not, we want to be left alone in the beginning for our mind and emotions are too overwhelmed to handle much outside interference. Our emotions are right on the very edge and we have barely got any control over them and our minds are doing all it can to hold the package together. This is why anti-anxiety meds would be a good help for a masto patient because of how fragile our grip over our emotions are. The last thing we need is the extra trouble the triggering creates.

So, give yourself TIME and be PATIENT and KIND with yourself and WITH OTHERS around you for they are also grieving too.

I hope this helps you! :-*

Lisa

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by Futurehope on 05/27/12 at 10:21:52

Thanks all.

Is it true that having MCAS makes crying a trigger?

I have always noticed that crying makes me really bad off in several ways. Yet, I've had people tell me having a good cry made them feel better. And I've responded, "really?" "That is not true for me." I've never thought that crying made me feel better.

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by Joan on 05/27/12 at 15:36:24

Yes, crying can trigger degranulation, and it does sometimes for me, depending on how many other triggers I have at the time.

I agree with Ana about meds. Whenever I've been in such a stressful situation with someone close dying, I've relied on extra antihistamines and also a low dose of lorazepam (Ativan), a short-acting medicine that helped me relax. 1/2 - 1 mg. before bed helped a lot with sleep. A quarter or 1/2 tab. helped me get through some days, too. Dr. Afrin or another physician can give you some ideas about meds to help you get through this safely. Another option is doxepin. As with anything sedating, be sure not to drive until you know how it affects you. The H1 antihistamine, hydroxyzine, is sedating, too.

If the doctor and aides who are caring for your mother aren't keeping her comfortable, you might want to ask hospice to help with her care. Most insurance and medicare will pay for it in the U.S. (I don't remember where you are.) The pain meds and oxygen they give don't prolong life, but they help the person be very peaceful and comfortable during the last days or hours.

The great thing about hospice is that they're unafraid of giving a therapeutic dose for pain. Of course, some people don't want their loved ones to be unresponsive. I just wanted them comfortable and not to suffer.

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by Rocky 9801 on 05/27/12 at 16:47:29

I went through much the same w/my mother 4 years ago w/an inoperable brain tumor. It is very difficult but there are a number of things that can help. Much good advice has been given already. I am new to masto but not the symptoms. I was on no meds at all while my mom was sick.

1) avail yourself of all resources. Neighbors, family, doctors, hospice, church, and friends - both yours and your mom's. Most people want to help but generally dont know what to do. If someone says they will be glad to help - give them an assignment. Tell them specifically what you need help with.

2) Take time for you. This is absolutely necessary so that you can be of maximum benefit to your mother and family.

3) Your feelings will run the gamut. Guilt, depression, anger and the like. There is nothing wrong with any of them. Remember - feelings, while real, are not facts.

4) Utilize your friends for you. Let the people closest to you, help you. Not just with your mom.

As stated by Lisa, i think, definitely tell Dr Afrin(?) what is going on. also, do not be timid regarding antidepressants for yourself. After 2 years of medical bs, I started prozac and therapy in January - I wish I would have done it sooner.

Post here and stay in contact with your friends. Do not isolate. And remember: "How do you eat an elephant?" ..... "one bite at a time."

Warmest regards,

John

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by Lisa on 05/27/12 at 16:50:53

EXCELLENT ADVICE JOHN!!!!!!!!!! ABSOLUTELY EXCELLENT!!! [smiley=tekst-toppie.gif]

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by Futurehope on 05/28/12 at 02:12:41

I thank you all for your support and ideas. It really helps to knows that others and been there and also have the health issues in addition.

@John,
My mother is already on hospice and comfort is the goal. I have now allowed her to be on Morphine every 6 hours even though this makes her out-of-it. It was a decision I made with my sister as we thought it preferable to feeling awake and miserable all day. We have already had our "good-bye" conversations, so I do not feel guilty about the morphine order.

Thanks all. I am holding up remarkably well. I attribute that to the prayers of my fellow parishoners at my church.

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by missybean on 05/28/12 at 03:53:22

I was a care taker for my grandma 4 years ago. We had her on hospice. She had dementia and COPD. Hospice was so wonderful, they did those things like bathing her, doctors came to us, it eliminated a lot of stress. I think you should see a counselor to have someone to talk to. Hospice usually has counselors the family can utilize. I would also look into the antidepressant thing. Helped me cope better I believe. I also thing crying when you feel the need to cry is ok. I think it's worse to always have to stuff those emotions. That creates anxiety. Our cells respond to our environment, if your in a constant state of stress and anxiety your cells will respond to that. Make time for yourself, this is a must. You have to have a break from caregiving. If you can't see a counselor, write in a journal, join a online support group. Just find a way to express all those emotions and stress you are dealing with.
Melissa

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by iamnotalone on 05/28/12 at 04:32:45

Hope;
I am so sorry for what you're going thru-now. When the pain subsides- You wil find solace in the fact that you were there for her when she needed you most. Even if we are not physically there with our loved ones at the moment they leave this world,
it is sometimes because on some level, they cant let go in front of you. To be able to say you've "been there" for her is the greatest
gift, & comfort.
I know this because I was the caregiver for both of my parents when it was their time to go. I was not with them when they left this world- & I felt guilty about that-till I realized I'd "been there" the rest of the time-before AND after. My masto hadn't come out yet when I lost them, but my dr. convinced me it was time for an antidepressant/antianxiety med. when my father was ill. I felt immediate relief,so that I could get through & do what needed doing. That was 5 years ago. My father's estate is just now being finalized! I could write a book. All of the suggestions here are great. "Futurehope"- what a perfect summary. It'll be okay sweetie, not only do you have support there, but you've got all of us, and we're here for you. :-*
You are Not alone,
lori

Title: Re: Seriously Stressful Family Situation - Any Coping Ideas?
Post by jbean on 05/29/12 at 05:33:40

Hi Hope,

I am sorry that you are going through this right now. My friend's mother recently passed away from cancer, and I was pretty close to her. My parents are elderly as well, so this all can be pretty overwhelming at times.

What I have found that has helped me is

(1) As you said, prayers. I was in several small groups at church, and they were a tremendous source of strength. Helped me to realize that this was all part of the cycle that we must go through in life.

(2) Stay close to your friends. Those little lunches and conversations with them helped to take the pressure off. A minor distraction now and then helps to maintain a sense of normalcy when everything is going all over the place.

(3) Having something to do to work off the stress. For me, it is gardening, yoga, art, etc. Whatever you can do that draws your attention away from everything for even a few moments helps.

(4) Honesty with your self and how you feel, freedom to express it in your own way as much as you can handle at one time without being sick.

(5) Patience with yourself as you feel your way through intense emotion.

(6) Hope that that you won't always be under this, and realizing that your mom will always be with you in spirit, even though she passes. Take comfort in knowing that you were there when she needed you, and that her love and lessons will live on to guide you in the future.

You are obviously a good daughter. I am sure your mom knows that. It is her time to go home and be at peace, and you will all meet again some day.

Keeping you in my prayers,

Jilly