Moving?

[Micheline]

I need some advice. I have talked to my social workers on my care team. My family has been torn apart from this disease and personal choices. I am faced with my family caregivers not wanting to be caregivers anymore. I so completly understand. I have increased my personal care, so the family doesn’t have to help me in that way anymore. On the emotional side, the support isn’t there either. I have been contemplating moving out on my own as the family household is a stressful situation. Social workers feel I am more than capable of doing this, but they are afraid I will shut everyone out. At this time I have as I am going through so many emotions. I have been put on a wait list but I feel I still can function as I still can talk, eat, breathe hands slowing down a bit but still functional. The hospice came by and suggested respite, but being summer beds are limited. She feels that I just need time to get away from the situation and regroup for my future. Do I want it to include my family absolutely, but I cannot get a for sure answer that they will be there in heart and soul and the trust factor. So much damage has been done that all I want is my family to be happy and if I remove myself they will have happiness again. I broke my family and 18 yrs is going down the drain with no hope in site. I will be facing the time I have left alone. This post is not to hurt my family, but I am at a fork in the road that can go really bad. I don’t want to make the wrong choice again. We haven’t made any memorable moments since my diagnosed, just been shut out, lonely and pain for all.

 

[Al]

Sorry to hear things are not going so well Micheline. Remember that you always have support here.

AL.

 

[joelc]

I am extremely sorry to hear this. I understand what has being going on and wish there was something I could do for you! Please let me know if there is something I can do and know we are all here to help however, we can. Feel free to vent anytime you want.

 

[LauraW]

I am so sorry. i don't know your whole story but I will be praying for you.

 

[Erica]

It's a very hard decision that you facing.
I don't know all your family situation, but I think you need to give them a second chance. Please try to talk with your family again.
I hate for you to face this awful disease on your own.
Feel free to PM me if you want to talk about this more.
I'll be thinking of you,Cookie.

 

[liz]

Micheline -

You sound so depressed. Has that been addressed with your care team? I understand the issues in your family are making everything worse. No wonder it's so hard to make a decision. I know taking an antidepressant won't fix your family but relocating won't cure depression.

JMHO - praying I haven't offended you.

Liz

 

[joelc]

Please everyone, just PRAY for her. Some of your suggestions, though well meaning, just are not possible.

 

[pamnandy]

Praying

Dear Micheline,

I am taking Joels advice to heart and will pray for you each day. I swear I feel your tears and feel your heart breaking. I'm so sorry you have to go through this. I am still fairly new to the forum, and we haven't had a chance to chat. But I've seen some old posts in the archives, and you seem to be such a sweetie. I know you are struggling right now. I pray that God beams a light on your path. Love, Pam

 

[bythesea]

Your family travails ring a strong note with me. Three years ago my brother passed and every day I regret not being able to reach out and help him.

His spinal cord injury had for many years slowly drained all the family and friends emotional and physical resources.

I myself am looking at an ALS diagnosis and all I can presently think of is how this disease (as many others) sometimes presents sacrifices of their love ones and caretakers that rob them of their own lives.

Its one thing to say people should commit so much to an individual, even a family member but after a point of no return, the burn out maybe irreversible.

The loved one becomes an intolerable burden. None of this may help you but when our mainstream culture perpetuates the individual over the group this may be inevitable.

I cannot believe the strength of many on this forum who refuse to give in to this monster but at some point don’t we all have to face such mortal questions?

Thanks for expressing such a painful experience. I salute you on your recognition of the problem. A black hole will suck all into itself.

 

[laurel]

Dear Micheline,
Having a disease such as ALS brings anguish to all of the family unit. I do believe that all the feelings of grief that Dr. Kubler-Ross talked about with reactions to death happen to each and every member of the family when catastrophic illness strikes.
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
How family members work their way through these stages is so dependent on the support that they have. They need objective people that they can safely talk to about their sadness, their rage, their fears about being left, their guilt over being horrified and scared by the physical changes they see. So many of us don't reach out to get that kind of help.
I watched my best friend who is a nurse too go through these stages when her 45 year old police officer husband who had a very debilitating stroke. He went from being the rock, the pillar of her life to being very dependent i.e. needing feeding, being washed, being toileted, etc. She became depressed, angry, and repulsed. And then very ashamed because of her reaction. I feared for them many times. I worried that he would commit suicide, and I worried that she would leave him. Both of them refused family counselling for nearly two years. Thank God he eventually decided he couldn't bare being the object of such disdain and he went to a counsellor. Things did turn around for them after he took the step. He needed to cry and rage and get the point of accepting his very severe permanent disabilities and know that he was still a good man and he was still the person he had always been with a different body now. He became stronger and this impacted terrifically on my friend. The terrible estrangement is no longer there and they are re-building their relationship.

Micheline you didn't break the family. They are in varying stages of grieving and it sounds like anger is where they be right now with their feelings. I know it is very hard for you to see the forest for the trees in the midst of the chaos that is obviously happening to all of you right now. But you did not break them. Yes, damage has been done with angry words being said. but remember many of those words were just words blurted out in the midst of terrible pain. Micheline we have all said things like "I hate you. Go away." But we really meant "my heart is broken, I can't stand what is happening to us". I know Joel said to lay off the advice, but I would like to say give the family some time. You mentioned bringing in care givers to take that role away from the family. I think that will start to make a big difference as that can be too much for some especially teenagers. Please give it some time Micheline before you decide to move as that will be very hard on you and them in the end. You are in my prayers.
Laurel

 

[MtPockets]

Dear Micheline,
Remember dear we are praying for you and are here anytime you want to talk more.

 

[crystalkk]

Micheline,

You are in my prayers.....please don't blame yourself it's not your fault you did not ask for ALS.
We are here if you need support and to talk more.

 

[tdamess]

i agree with laurel, wish you the best

 

[Micheline]

Thank you everyone for your kind words, inspiration and hope that you all have. You all have great hearts! I hope one day I can hope and dream again.

 

[thelma313]

I hope that for you too, Micheline. You deserve it!