How does your Wegener's Affect your Family?

[onatreetop]

I see the prim on Monday. I have a list of meds to ask about.The valuim is nice but..................... Cant take it forever.

[Lola]

[QUOTE=Jack;8486]Thought I would raise this one as it has come up in another thread and I think it is a subject we can neglect given all the other problems we have to take on board.QUOTE]

I think this is a very relevant thread and I would just like to vent.
This past fall it became apparent that I was quite ill. I think my sister read the internet and alerted my 87 year old mother.

Result: Mom spent several panicky months believing that her sole caregiver would die. She watches me like a hawk and NEEDS constant reassurances, many of which I had to lie about as I was gaining my strength.

My 2 sisters evidently believed so, too - so they have ignored me. I recently tried to update them both with good news, but they continue to give me the cold shoulder. 12 months ago we emailed 2-3 times daily and had a lot of fun. WE considered ourselves great friends. Now, nothing.

My kids have had varying reactions: My RN daughter is very concerned and interested. My paramedic son is interested, but my oldest keeps his distance. He does not like to deal with these situations.

My husband spends a lot of energy trying to keep me positive, and is quick to point out how my sisters might be needing to keep their distance in order not to face their own mortality - but it hurts, nonetheless.

I just needed to write this. Wonder if anyone else has had this reaction from family members?

[pberggren1]

Yes Lola, I somewhat know how you feel.

My parents are wonderful as I now have to live with them.

But I have cousins and aunts and uncles that just don't seem to care or understand and just say get a real job.

[Sangye]

I'm sorry your family isn't supportive of you, Moyan and Phil. You deserve to be treated with compassion.

[JanW]

I'm sorry too, guys. It is especially difficult whn you can appear so 'normal.' I have to say that my family has be wonderful and it's great that my kids are a little older but not yet full fledged teens -- they can be very helpful around the house, and aren't completely absorbed with only themselves.

[Doug]

As the primary caregiver for my elderly parents at the time I became a full-fledged weggie, there were harrowing times for all. None of my siblings lived in town, and the next closest one (in terms of miles) was dealing with breast cancer at the time: The youngest and oldest children were mortally ill! My parents were very, very distraught!

Fortunately for them- and me!- neighbors and church family came together to help them, get places and know they had support in all ways. Toward the end of my hospitalization, they actually showed great signs of near self-reliance. It took lots of pressure off me initially, but, between getting home from Denver and the end of August 2004, it was clear my father was in decline. Neither my mother nor I was able to help him, safely. Once he went into the care center, things eased up a bit on my mother and me.

By 2007, however, her needs began to overwhelm me to a point I came down with shingles (I believe there was a relationship between my lowered resistance and the fact she required more and more of my energy at a time I had little for myself....familiar stuff for weggies!). My boss at the time was aware of my home situation and could see how I'd broken down after a fairly good recovery up through (I suppose....) mid 2006.

He arranged a conference call with my three siblings to up-date them on my health, certainly, but to go over how my mother had become an increasingly greater burden on me than I could handle: They arranged through her doctor to have her go into the care center, where, for the final year of his life, my Dad and Mom shared a room and the end of an earthly marriage that lasted 71 years. They "dated" for five years before they married.

My mother still lives at the care center. I will visit her, usual, in a few minutes, part of a daily ritual that I will follow through the end of her life. She's happy there, they treat her well, she's active in what they offer residents to do, including chapel (this is a Lutheran facility, but they are mindful of the needs of Presbyterians like us- grape juice, please! no wine passes these Reformed lips (well, maybe not that intense!). I live with Louie, my cat, in an apartment that is comfortable but over-priced, perhaps. On the other hand, with my medical history, I hope I can make the decisiuon to go into assisted living, whatever level of care I might need without tying family and friends into knots first.

That was kind of a sad story, rereading it. Oddly, I feel confortable to have lived it. I feel emotionally more fit. Spiritually more fit. Beat up as hell! My quirky sense of humor has had a terrible workout these past few years as I try to make sense of this thing that has befallen me, my life!

What do you tell family when they make demand on you that you can't meet: I want purple orchids on my custom coffin, and gold handles. Can you do that for me?

[Lola]

Wow, Doug! Great story, indeed.

I find it interesting that you developed shingles from feeling overwhelmed by the responsibilities of caring for your mother. That is most likely the cause of my latest and greatest flare. Those same feelings.

I also find it amazing that your boss arranged the conference call with your siblings. What a great relationship you had at work. Are you still working?

I am on the cusp of retirement, simply because I can barely cope any longer. We moved to our present location across the state 2 years ago. I took care of Mom back there, but she chose to move, too, to be near me rather than one of my sisters. So I had to face leaving my job and friends of 26 years, sell the house I bought on my own, find a new job, and get Mom settled in. She did not settle in well! I'll leave it at that.

I have already cut my work hours in half, and still find that I am pulled in too many directions while trying to regain remission.
Thanks for your story, Doug. It is comforting to me.

[elephant]

I was thinking the same thing as Lola. Wow! Doug you still are a stitch of fun and your sense of humor keeps everyone going including your cat.
I have no clue what is in store for me, since I have young children...I need to just stay alive.... and hoping the surgeries stop...I might have another one soon. One to remove my big huge giant large, enormous hemorrhoids! OUCH!

[Cindy M]

I can relate to some of these stories. While I have some family and friends that have stood up to help there are others that have almost turned there back on me. This is not the greatest feeling. I know some don't understand the pain you are in, that you look different because of the preds etc. I guess my saddest thing is that my youngest brother has a real hard time just looking at me. Very rarely talks to me. My sister and I can both be sitting there and he will joke and have a conversation with her and act like I am not even there. We are all in our mid to late 40s so its not like we are little kids. Also one of my friends who I had (before WG) considered one of my closest has done almost the same thing. We do talk but very rarely. I have picked up the phone to call her but it is mostly my effort. These would be the 2 that bother's me the most. I think they need to know that we are also struggling with our emotions as well as the disease and that is not easy.

I was telling a friend from work (currently I am on Extended disability) that I actually get a little excited when I have an upcoming doctor's appt. because it gives me something to plan and I guess look forward to. I can get out of the house and feel like I have a reason or plan to be out. She laughed at me and said I am starting to sound like a little old woman who can't wait for her next outing. I think these people need to take a good look at the quality of life we have. That we can't just pick up a do things like they can.

This really is a great thread. I really feel vented right now. Thanks Jack!

[Sangye]

It helps me to remember that the way others treat me is a reflection of them, not me. Cindy, your friend who said you sound like an old woman is just revealing her own discomfort about aging, sickness, etc.... We Weggies are terrifying to people. If it can happen to us, it can happen to them. I often say I'm like a walking mirror that shows others their own mortality. All their "stuff" comes out--I don't even need to say anything.

Of course, I don't usually remember this until later, when I'm reeling from what someone said or didn't say. But at least it helps me get back up on my feet.