Tuesday, September 02, 2008

In Sickness and in Health

When I wrote my wedding ceremony I kept the part about in sickness and in health, until death do us part. I conveniently and purposely left out obey. ;) Don't get me wrong, I have complete faith in Dave's love, but I feel there was a smidgen of denial when he said "I do." When we fall in love we rarely think about our spouses personality realities. We don't scrutinize our spouses, before marriage, to see if they could handle the other getting a devastating illness. Most of us put our faith in love, but in my case I had to ask the hard questions. He passed with flying colors. So why is it I fear becoming a burden?

Some people are natural nurtures and some are just not. In many marriages it's not always a 50/50 deal. There is usually one partner who is the "glue" that binds the family together. Ironically, if that is the spouse to fall ill the family can fall like a house of cards. It starts with the healthy spouse and they set the example for the kids. The healthy spouse can get angry that ALS has stolen their dreams, changed their future and has no cure. Good caregivers are hard to find and very expensive for full time care. The spouse must continue to work and then becomes a stressed out caregiver once he returns home. Finances get drained by part time care. The spouses might yell, bully, don't listen to the doctors, are physically rough and threaten to put their loved one in a home. The once strong spouse is put in a resentful atmosphere feeling like a burden. THIS IS NOT ACCEPTABLE! They did not ask for this and deserve love and understanding. They do not enjoy the "luxury" of being bathed, a stranger wiping their ass and being stuck in a chair!

I'm reading more and more about stories like these. Some get divorces to afford home care, but may lose their children. Some have gone to a home for their families sake but receive horrible care. I am shocked by the fact that this is not rare for families living with chronic illnesses. The abuse has got to stop! Barack said in a debate with McCain he wanted more help for patients with diseases like ALS, but will he do it? I'm holding him to it because I am sickened at the thought of these stories. There are many spouses who are excellent caregivers, but what about the many others? We need covered home health care added to more affordable heathcare. These families have to be poor to receive help, so what happens to the sick middle class?

I see Dave through new eyes and I'm very lucky to have him. I'm working on not asking for something when he's busy because I hate that impatient "WHAT?" I tell him I can't see through walls and he apologizes. Is that just a man thing? He is a wonderful man, married to a handful and yet he still loves me. We have a plan that we must save for now. I will have part time caregivers and I am willing to go to a hospice for respite care once in awhile to give Dave a vacation. I know where Dave will struggle and when I will need to be more patient. My mantra is "don't sweat the small stuff" which I really suck at.

If you have a sick friend, single or married, don't be afraid to lend a hand and include your kids. Most people will lose friends on their journey so they could use a real friend. Even if it's a visit and a hug, because you never know what's going on behind closed doors.

This truth needed to be told.


Photo by Deviant Art called The Rainbow
by fearless vampire

19 comments:

paisley said...

you are so together.. i feel so complicated inside myself,, and yet you seem to have it all planned out so consicely..

i cannot tell you how much i admire your strength.....

Lucy said...

shake hands with me Tammy! I sweat the small stuff too, no matter how much I try to talk myself out of it!

This TRuTH u tell, SHouLD be told and you told it so well. WE desperately need a 360 for healthcare.
As far as being a burden, I think no matter how much you love someone, there are going to be some bad days when you lose patience and as hard as you try, you make your loved one feel like they are burdening you. (losing patience is probably MORE a man thing!! Since us women are nearly peerrrfect!)
Forgiveness is necessary on both sides.
Your love for each other is so beautiful and it will always override any other emotions.
xoxo

emmapeelDallas said...

Yes, it does need to be told, and you tell it beautifully! Hey, girlfriend, you made my day with your call and I will call you back and we'll have a long talk soon! Thanks so much, Tammy.

XO

Judi

Giggles said...

Tammy this is such an insightful post. You speak so eloquently words of truth about chronic illness. I have a bum knee lately. I feel more debilitated unable to function as well. I know well how it feels to need the help. It's very difficult to depend on others, so I try to compensate for it!!

Hugs dear friend!
You are so wise
Love Sherrie

rebecca said...

tammy,

you write so eloquently of the plight of the disabled and their caregivers. thank you for giving us that reminder my friend.

i am sending you and dave much love and strength....

((hugs))
rebecca

Genuine Gem said...

you are so right! This is beautifully put and beautifully worded. I have seen it happen negatively too many times, not just with spouses but with kids. I am in constant contact with special need families and there is no excuse for punishing a child because the adult is stressed out. Do you mind if I share this? Let me know, thanks :) It's worth sharing!
I count my blessings that Hubby and I have been through the sicknesses, special needs, of each other and the kids and we're both still here and functioning :) His health deteriorated after being injured on the job, mine dropped and dr is still looking into it and the boys have their special needs, it isn't easy. Divorce and split families is common. We are against the odds girl. :D
((HUGS))

Mary Timme said...

This a profound example of what happens when Warehousing, becomes care. There is no single answer and I truly believe we each have to find out what we are 'made of' in times like these where we take care of only one another. To whom else would we go?

Just Jen said...

thanks tammy!! I'm glad you found 'me' hehe
I was worried that people wouldn't! I'm here to pick up the post to email out. I know a few that will really relate to this and be thankful they have a good solid marriage! And a few that will pass it on to those that don't :(
spread the word!

Star said...

I hear you loud and clear. I often wonder what things will be like for me down the road a piece if I get Alzheimer's like my father. My husband and I have no children to look out for our interests; who will see to it that I don't get stuck in a facility that shoves me in the corner in a pile of my own ****?

We are both lucky to have devoted husbands, but so many more issues that go beyond that.

Sending love and big hugs,

Star

Joyce Ellen Davis said...

Well said, my friend!

Geraldine said...

You are an amazing person Tammy, Ill say it again. You have said so much in this post and some of which I can definitely relate to. I was a full time caregiver to my mom for over a year with NO breaks (friends were scarce at the time to do much in that respect) and I was physically a wreck. I can see both sides of the picture, so much clearer now. I feel for you and for Dave. It must be incredibly hard to stay focused and upbeat but you seem to do just that most of the time. Hugs to both of you. Take care and know so many people care about and admire you, including me.

www.mypoeticpath.wordpress.com

paris parfait said...

Yes, the truth always needs to be told, Tammy. And you've done it so well here. You are lucky with Dave; so many people aren't that lucky. Thanks for shining a light on this important issue. You are amazing. xoxox

TJ said...

A friend wrote this { tee hee }

We forget to look up
at the signs, the beauty
the promise, the desire for joy
in a arch of shimmering glory.

Life is what it is...we all try to fight the elements and when we aren't fighting we are searching for answers.
Sometimes we have the best there is and difficulties make it damn hard to hold them as closely as we should.

I too suck at it.
Love You,
TJ

Amber said...

We all need to hear this. Because unless we are dealing with something like this first hand, it gets pushed to the back of our minds. Thank you for being you and letting us learn from your journey and wisdom.

oxox :)

tinker said...

This is something everyone should probably think about. Its not always easy being the messenger either - thanks for telling the hard truth, Tammy. Many, many (((HUGS))) to you - and Dave too.

onemorebeliever said...

thank you for sharing yr vows... absolutely who is gonna be what in case of... never really consider that... faith in love, amen... yr right it is a man thing that is spread across a great divide in the middle somewhere between man and woman... thank you for bringing "care" to the front.. hmm, it is a good thing to consider seeing how all these baby boomers are hitting 60-70s... it is hard for us to imagine not being able to wipe our own hinnees and have to depend on someone to help... once we've been through that the possibilities become more of a reality... sometimes it is abt love, and that only...

TJ said...

My friends,
Damn you say!!!
Wood cost that much in the mountians......
Oh honey, you pay a huge price being there but what a beautiful place to live and reflect.
I am willing to bet that you and Dave and shared more there then ever......can be appreciated.
I think of you two always,

your loving friend
TJ
PS. I can not be without a camera!!!

JP/deb said...

Dear Tammy,

What an awesome post. This is a truth that needed to be told and in doing so you are not only an advocate for caregivers, but an advocate for yourself.

Peace & much love,
JP/deb

Nancy said...

How am I missing your posts? I missed the last 2. I'm catching up, but can't comment right now. Let's talk/talk.

Love you tons,
Nance