A Message to the "Lurkers" Out There

[mary]

Granny,
I get great enjoyment reading all of the lovely things people say to encourage and strengthen others. Your name stands out as being very caring. No, I will not give out my phone number or my email address. I have learned that it is not an easy thing to be caring or giving. A friend told me that to give once is to be nice. To give twice is to be very nice. To give 3 times to some people is to become a so and so for not giving ten times. I hope you understand I am trying to add huimor and not whine.
I think this site is inspirational in the fact that people with very serious problems of their own are still trying to find a way to help others.
You sound sweet and caring, but also very wise. Thanks so much for thinking of me. I was having problems for some reason logging in and thus could not reply before now.
I'm so fearful of unintentionally hurting someone and am trying to learn from others on how best to be supportive. You will be one of my mentors.
Mary

Dearest Mary,
While I do understand that you want to help (we all do), please do not give your phone number to anyone without talking to some of the moderators.
Sometimes you can help just by posting a response here, or at one of the other threads. There are alot of ways we can help without giving out personal information. You sound so sweet and caring. Please take care.

[mary]

Granny,
I am flattered you show concern for me. I do not know that much about the PM feature. I think one needs to give their email address out to use it.
Granny, I'm probably much older than you. I pay for my Internet service with a check as I do not have a credit card and do not want one. Still, on my junk list there is a lot of what I call pornography and people trying to get money out of you. My email list is exclusive which means if you are not part of my address book you go to the junk list. Junk is kept 5 days and so I check it every so often.
This site says little about protecting each other. When people are down and vulnerable predators come out of the wood work. I have offered to do phone work for people when they have a crisis as in losing a loved one or having someone in the hospital. I do not wish to mention unpleasant or negative things to someone in crisis. I offer to do that which they might find uncomfortable or boring. I try to make a joke as in "got anything you think you should do and you wouldn't ask your worse enemy to do--well I'm available and free."
Be as kind to you as you are to others. I'm sure God treasures you.
Mary

Mary;
I have found out that to help someone more one on one is to use the PM feature here. Works very well for many and you can also get to know that person better on a personal level if an issue is neccessary to do so. So many reasons not to give out private #'s.

[mary]

I believe others, including doctors, unintentionally add to our survivor's guilt. When people have grand mal seizures, they do not remember what happened before, during, and often for an hour or more afterwards. When my IS has a seizure I have to go into the doctor's office with him. He got angry once and said "I'm the one who had the seizure." In front of the doctor I said "I did what I was told no one could do. I did a deep knee bend and picked up a 180 pound thrashing you. I was told if I did this, the chances of getting a broken arm were high. I picked you up, sat down and cushioned each side of your head for almost ten minutes. If you think your muscles ache, well so do mine." The doctor seemed surprised.
A friend of mine ssaid she used to take her hubby to the doctor and say "He is the one who had the stroke. I am the one about to have one."
Keep posting. It is okay to get discouraged and down. Post and you make others know they are not alone in their feelings.
Mary





One other thing: maybe well spouses have Survivor Guilt. We are healthy, and it makes us feel guilty that we've been spared from the illness, which has often struck our spouses randomly. We don't feel entitled to have fun if they can't also.[/quote]

[Dorothy Saunders]

Good point. I think Survivor Guilt is often an issue for well spouses.

[alwayssweetdreams]

I never thought of my neurophyschologist as an ANGEL.

After reading Dave's post and what his angel (doc) said to him-I realized I have an angel too.

5 Days ago when I was in her office for check-in after holidays, she just listened to me for the whole hour. At the end of the hour "It is time to do something about this right now, I have a free hour". In that hour she made me set right there and call hospice SW, and nurse. I handed the phone to Doctor to talk with both. She had me lay down in a free office until decisions were made. She checked on me, and kept me updated as to progress. They found him a bed, and could admit him at 5pm.

There is a provision in hospice/medicare, where if there is only 1 primary caregiver, and that caregiver can't handle it-they can be admitted to a "hospice bed" which are located in most care centers. His hospice nurse, doctor, and CNA visit just like at home, however the floor nurses keep an eye as to needs the other 22.5 hrs per day. (check Medicare guideline book or website-there was a slight change for 2008)

Back to Angel story (Sorry)

at 4:45 pm my doc came in and woke me, made sure I understood what whe was saying "T--- is refusing to go to Care Center, he says will just be a number-he has made arrangements to go to your daughter's I realized how tired I really was and said "whatever"

It been 5 days, I check in by email with "my angel" every day. IS is having the time of his life--has 7 caregivers (age 18 mos to 35 yrs) and as my daughter just told me "there is no way you can compete with that mom"

Trying to let my body have time to rest, doing a little every day. Life will go on for me, and I really do DESERVE happiness everyday.
ASD

[Sam]

It been 5 days, I check in by email with "my angel" every day. IS is having the time of his life--has 7 caregivers (age 18 mos to 35 yrs) and as my daughter just told me "there is no way you can compete with that mom"

Trying to let my body have time to rest, doing a little every day. Life will go on for me, and I really do DESERVE happiness everyday.
ASD

This sounds perfect to me. I'm glad you're getting the rest and happiness that you should be. Will your daughter be able to keep up the caregiving? I really mean that in a nice way

Sam

[alwayssweetdreams]

That is the million Dollar question......................

She has a new husband who is very demanding--originally I gave it 2 weeks, but miracles do happen. They had their first "disaster" late today and had to call hospice nurse, who hustled right over to get breakthrough pain under control.

My "angel" emailed back this afternoon, in response to my question how can I possibly be this tired her answer was "you have been to war, you are shellshocked, give it all the time it takes--be kind to your self
Sam, you know what--I have given up control of a situation-I have had no control over His mom and dad just may get to take a turn after all. MIL has thanked me numerous times for taking such good care of him (she had him 18 yrs/I've had him 37 yrs-I thought it was a rather stupid remark)

By doctors, and hospice nurses and doctor-he should have been gone at least 3 times by now. day by day

ASD

[Indigo]

Hi all,

I am new to the WSA but unfortunately not new to being a WS. I will say I tend to be a lurker/loner and am not good at admitting how I really feel. My IS has so many conditions I cannot list them all but here are a few:

Raynauds, MBL, Chronic Pain, Rheumatoid Arthritis, Osteopina Imperfecta, IBS, Asthma, hearing loss, Low bone density, severe L5/S1 back injury, migraines, and Ehlers Danlose.

It has been about 5 years since she has been unable to work and our
"marriage" has changed from a partnership to a caretaker/companion relationship. I call it the rollercoaster. We are on separate rollercoasters and neither one can understand what the other is experiencing. The guilt, the hurt, the anger at losing everything you have dreamed of....the desire to leave but the inability to live with yourself if you do because of the impact of your decision on the IS. It can be a nightmare for sure. Can't get it all in one post, but just know I "get it" and am glad to have found some others who understand what I struggle with on a daily basis.

[LarryB]

I am glad you are here and hope you benefit from being with us.

[Katt]

Indigo,

Welcome to the club no one wants to join. But so glad you found us.

Whether you lurk or join in, we will be here with you.

We have a friend with OI, and he sure has had a rough course of it. I don't know what else he has, but the OI has cost him dearly.

Join us when you feel comfortable, and again, welcome.

Kat

[alwayssweetdreams]

Welcome Indigo!!!

I looked at my posts from 8 months ago and I cannot believe I am the same person. Being here and free to vent the feelings, emotions, nightmares and dreams has done me a world of good.

I hope you will take time to share with us your "rollercoaster life". No one in the regular world can understand what it is like to be a caregiver to the person we fell in love with so many years ago. We love that person, but in a very different way for most of us.

I have a 70 yr old uncle who is taking care of his wife (my mom's younger sister). My aunt has early onset alzheimers. I emailed my uncle (before I was caregiver) and told him how wonderful it was that he loved her so much and took care of her at home.

He fired back an e-mail that shocked me. He said, "I am not taking care of her at home because I love her at this time in my life, I am taking care of her because I have loved her before the alzheimers" I thought that rather a strange answer, but now I understand.

With this group you can ask questions, vent, laugh and it is okay to feel however you feel, we are all just people in a different situation that others (and us) don't always understand.
ASD

[noodle3]

Welcome to WellSpouse Indigo. Please let us know how it is going for you... we care.
noodle

[Indigo]

I really appreciate all the kind words....I hope to make some new friends here. You may find my posts come in spurts since I have a pretty demanding job and of course you can know about the home life.

I look at myself and I am not the same person I was 5 years ago...I have lost so much of myself. These disabilities can be an all-consuming fire - not just finances but dreams, self-confidence, friendships - I can't think of an area of my life not changed because of the situation.

I am on somewhat of a mission to re-claim myself. I refuse to be totally defined by my IS and her disability and that has brought me here. I tend to loneliness and lurking, but I am making some purposed changes in myself and my life and I hope to give and receive friendship, encouragement and hope.

Looking forward to the changes....

[tundra lodger]

Welcome, Indigo!
From one loner to another: while I'm sad you've need of this place, I'm very pleased that you found it! This place transformed me from a loner/lurker to someone a bit more gregarious (friends here would consider that the understatement of the year). Amazing what a little support and understanding can do!
Working and caregiving is a tightrope no one should have to walk; but many of us have no choice. Count me on the list of those in your corner, with broad shoulders, ready ears, and appendages crossed.
Hope to see you around the board!
tl