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October 4, 2010

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October 4, 2010

The Well Spouse(tm) Association offers peer support to current or former spousal caregivers -- husbands, wives or partners of people with chronic illness and/or disability. As such our goal is to help spousal caregivers offer the best care and support they can to their ill spouse. Where disease orgs offer tips and tricks for caregivers, we offer them motivation -- the glue that helps each one stick to their own personal mission to promote the help of their ill spouse, by paying attention to their own physical, mental and emotional health. And because the intimacy relationship is so much stronger than other family relationship, spousal caregivers need an organization especially for them -- and their ill spouses, friends and family can help the cause of promoting family health for both members of the couple, by urging the spousal caregiver to join the Well Spouse(tm) Association.

The Great!

I've personally experienced the results of this organization in...

the support I've received from other spousal caregivers, as I've had to deal with the "elephant in the room" -- chronic illness -- with two spouses.

Ways to make it better...

If I had to make changes to this organization, I would...

help it to become better known to friends, family, professional caregivers and the general public -- as the go-to group for husbands, wives or partners of persons with chronic illness and/or disability/

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

There is great camaraderie amongst the more experienced volunteers, and empathetic support for "newbies," who often come to us in great distress.

The kinds of staff and volunteers that I met were...

Friendly and caring, who had "Been there, done that," and were ready and willing to lend an ear / give support.

If this organization had 10 million bucks, it could...

- Hire an Executive Director - Set up a paid (nonorarium) volunteer coordinator in every state - Recruit many more volunteers, and some paid staff to supervise their efforts. - Build a supportive financial donor base - Provide paid respite care

Ways to make it better...

More coordination of volunteer effort is needed.

In my opinion, the biggest challenges facing this organization are...

Raising awareness amongst spousal caregivers, their friends, family, workmates and the general public

One thing I'd also say is that...

Among family caregivers, spousal caregivers are the last to self-identify. We need to change this, so that everyone thinks of support for the spousa or partner, as well as for the ill person.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

July 30, 2009

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July 30, 2009

Prior to finding the WSA family I was a poster child for clinical depression. I barely managed to make it through each day – self-medicating, sleeping , withdrawing from the world that I felt had treated me unfairly. I was incapable of happiness and lived only to make it through the next medical crisis. I cared so much for my beloved wife that I ignored my own health concerns – eating too much, ignoring the need to have a hip replacement because I could not be spared from caregiving. Well Spouse for me is a place where everyone “gets it”, where there are no judgments, - just support. A family that cares about each other and helps us over the all too frequent rough spots in ways our own children, parents and siblings cannot. This place goes beyond friendship and speaks of acceptance and support. In fact, we even supply some hard-learned medical advice, how to navigate the ‘systems’, where to get help and just a plain old shoulder to cry on.

The Great!

I've personally experienced the results of this organization in...

the way people progress when they realize they are not the only ones wlaking this path.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the comraderie and sense of self that returns to you after laboring alone through the trials of caregiving, balancing your love (and loss of a spouse) against the constant care you provide

The kinds of staff and volunteers that I met were...

dedicated, caring and part of the family that 'gets it'.

If this organization had 10 million bucks, it could...

reach the 6 to 6 million spousal caregivers that labor daily unrecognized, caring for their loved ones, saving Medicare at least $51 million per year

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

The Well Spouse Association is a true lifeline for those caring for spouses with serious chronic illnesses. Others do not seem to understand how overwhelmed and isolated we can become, but our peers "get it". Through support groups and an online forum, we offer practical advice and emotional support to one another.

The Great!

I've personally experienced the results of this organization in...

myself. My feelings have been validated, and I've gained insight into how to live a more balanced life.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

meeting others who understand what my life is really like as the spouse of a quadriplegic.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

Right after my marriage 10 years ago, my husband developed a neurodegenerative condition which by now has rendered him physically and mentally disabled in almost every way. The marriage has been a very sad, very difficult one for me; but I love my husband and want to care for him at home. The Well Spouse Association has made all the difference to me since I joined about 4 years ago. I no longer feel alone and isolated from the world, as I have made so many friends from our local support group who share and understand my horrific challenges. Well Spouse has also given me an outlet for expression in articles I write for their newsletter and website. As a Board member, I feel like I am a contributing member of society, even though I am unable to work because of my husband's care needs.

The Great!

I've personally experienced the results of this organization in...

my increased ability to cope with my husband's devastating chronic illness, through my Well Spouse friendships and the volunteer I do for Well Spouse.

Ways to make it better...

If I had to make changes to this organization, I would...

not be a caregiver, because I would not be able to run an org. and also meet the exhausting demands of my husband's care.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

making so many new friends who are facing the same long-term daily challenges that I face in spousal caregiving; sometimes we can even laugh together!

The kinds of staff and volunteers that I met were...

warm, welcoming, and so easy to talk to and become friends with.

If this organization had 10 million bucks, it could...

hire staff to reach out to spousal caregivers and offer more support groups, more helpful literature, more respite events, and financial assistance to spousal caregivers devastated by the costs of long-term illness.

Ways to make it better...

no "ifs" - it has been a truly lifesaving and sanity-saving experience.

In my opinion, the biggest challenges facing this organization are...

lack of funds to hire paid staff - we are all volunteers while we are caregivers, and none of us can give our all to Well Spouse as we struggle with our own physical and financial burdens.

One thing I'd also say is that...

spousal caregiving can be fatal - caregivers have literally dropped dead from the constant stress. Our medical and social systems do NOT offer support to spousal caregivers; thus Well Spouse is ESSENTIAL.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

Being a caregiver to a spouse with a chronic illness means saying goodbye to your hopes and dreams for the future. It often means a loss of intimacy, depression, isolation, and financial devastation. I know of no other organization that provides the kind of support and validation that the WSA does to spousal caregivers. Members of the WSA will find kindred spirits within their local support groups, through the WSA on line forum, and in the quarterly newsletter "Mainstay." The people who are a part of this wonderful organization "get it" like no else can.

The Great!

I've personally experienced the results of this organization in...

the people who attend the support groups. Many have stated that this organization "saved their life."

Ways to make it better...

If I had to make changes to this organization, I would...

attempt to get more support groups established to reach more people.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the validation. Many spousal caregivers often comment that they thought they were the only ones "to feel this way."

Ways to make it better...

I'd known about it sooner.

In my opinion, the biggest challenges facing this organization are...

increasing it's funding and expanding the number of support groups across the country.

One thing I'd also say is that...

the people you meet through the WSA are amoungst the kindest, most dedicated, and most authentic you'll meet anywhere.

When was your last experience with this nonprofit?

2009

July 28, 2009

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July 28, 2009

The Well Spouse Association saved my life. I was overwhelmed until I found this support group of other spouses who understood where I was coming from without much explanation from me. I knew I was not alone. In addition to telling my story, I comforted others as they comforted me. I learned a lot about what to expect in my situation and how others deal with those situations. Spouses face special burdens such as the loss of their partner, loss of the loved one, loss of their financial security and many more losses. These each are greived and must be dealt with. The Well Spouse Association has provided me with the strength to carry on with my life's work which is now caregiving.

The Great!

I've personally experienced the results of this organization in...

my life's work which is now caregiving. I continue with my support group as I volunteer in other roles. It has changed my life by giving me the purpose of caring for myself so that I may continue to take good care of my spouse.

Ways to make it better...

If I had to make changes to this organization, I would...

Continue to reach out to spousal caregivers.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

The interpersonal support and encouragement which enabled me to go on and care for myself as I care for my spouse. The respite and opportunity for growth was developed by my involvement and led to leadership roles in the Association.

The kinds of staff and volunteers that I met were...

In one word they were outstanding. The dedication of everyone involved was very impressive.

If this organization had 10 million bucks, it could...

Reach out to the millions of other spousal caregivers out there who provide such a valuable service to society by caring for their spouses without complaint.

Ways to make it better...

I would have found this organization sooner.

In my opinion, the biggest challenges facing this organization are...

Getting the word out.

When was your last experience with this nonprofit?

2009

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