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Diane123

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Joined
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3
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Friend was DX
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02/2018
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CA
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Ontario
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Toronto
I’ve been with my partner for almost five years but we don’t live together and don’t plan too.
Only a few months ago I experienced the sudden unexpected death, by fentynol, of my eighteen year old daughter. I’m still trying to cope with that.
My partner has always been unable to be supportive of me, because he is first and foremost being protective of himself. It’s been hard for me to cope whilst in a relationship with someone who doesn’t know how to support me.
During this time of trying to learn how to grieve and continue life after my daughters death, whilst putting my best effort into caring for her surviving sister, my partner had been suffering from loss of control of one hand, constant muscle twitches and a rapidly increasing difficulty speaking.
After a few tests, he was sent to an ALS centre for more tests and yesterday was told that in all likelihood he has ALS.
He has been a mess ever since, why wouldn’t he be? I left work to be with him and held him while he cried, and this morning just got off the phone with him, he’s still in tears.
I am not a crier, I think he would feel better if I was, but I just can’t do it. When my daughter died, if I began crying, my partner would cry more and I’d immediately stop. I don’t know what’s wrong with me.
I feel like a cold hearted and horrible person. My partner has told his best friend but no one else. He refused home physio therapy that the centre wanted to start right away, to avoid having his mother and sister, with whom he lives, know he has this. I don’t believe I can give him the support he needs. I don’t know what to do.
There really isn’t much one can do. I encourage him to get support from his friend.
His friend cried with him on the phone and I did not. He must think me a monster.
Is there anyone out there who has any similar issues with being supportive? Before his diagnosis I felt like I was under so much stress with the loss of my daughter, work and moving that I may just breakdown. Now I’m just numb. He deserves more. Anyone with this diagnosis does. What do I do?
 

KimT

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Joined
Nov 18, 2014
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3,602
Reason
PALS
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08/2015
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The Beach
First, I'm so very sorry for your loss of your daughter. Everyone reacts differently to tragedy and situations. You are being honest and it's better to know up front if you are not capable of providing him the support and care he needs.

As a PALS, I would recommend you have a talk with him. After 5 years he probably knows you very well but talking it through might help both of you.

Your post hit a very raw nerve with me. I have no children and I'm not married. When I was in limbo with my diagnosis, I was told by a couple of members of my family that they would take care of me if it turned out to be ALS. After my diagnosis it was a different story. They distanced themselves from me both physically and emotionally. These were two relatives that I gave a lot of money to and always stayed with me when they took their kids to Florida. When they visited, I showered them with elaborate meals, gifts, and trips. During the year I sent them money and presents for every occasion.

Your partner deserves caregivers who are committed and will stick with him until the end. If that is not you, you need to let him know now and not when he is more disabled. Obviously his mother and sister will have to know. He is in shock and not thinking things out clearly. He will eventually have to rely on other people to help him and, if he is living with his mother and sister, it will probably be them.

I doubt he thinks you're a monster. He wouldn't have invested five precious years with you if he thought that.

I don't know how old you both are but if you were my daughter or sister, I'd recommend counseling. Dealing with the loss of a child and then knowing that your partner has a terminal illness is just so much for one person to take. It's terrible. It doesn't matter if you can cry or can't cry, it's tragic and you need to take care of yourself.
 

KarenNWendyn

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Moderator
Joined
Jul 29, 2017
Messages
3,119
Reason
PALS
Diagnosis
07/2017
Country
US
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OR
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Southern Oregon
I second what Kim said. I’m also sorry for the loss of your child.

Also, everyone grieves differently. Give yourself time to grieve for yourself, your boyfriend, and the change this will bring to your relationship. It doesn’t matter if the tears don’t come now, or even later. The fact you came to this forum and posted shows you do care. Maybe you can share the forum with your boyfriend.

Taking care of a PALS is an enormous commitment. This will force you to reevaluate your relationship as you decide just how much, if any, of that commitment you are willing to take on. Hopefully you can help him in some capacity. I agree with Kim that counseling would be helpful in helping you process all this.
 

lgelb

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Nov 5, 2009
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7,951
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Lost a loved one
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09/2009
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US
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WA
City
Seattle
Diane,

I think we are unanimous on this, and the fact that you yourself have a surviving daughter to care for makes it all the more important that your two families find a way to work together to support your partner, assuming you are not going to walk away entirely.

But it will not be overnight. First, you and your daughter have to find your own peace, and yes, that may mean counseling or just a lot of long walks...but you cannot go straight from one tragedy to the next (and it sounds like work and moving play in as well) with unresolved anger and grief that will ultimately affect your partner, and likely each other.

Note -- by "resolved," I don't mean that you find a reason where there is none, but that you find your own best reasons for carrying on, and prioritize accordingly.

For the moment, however, I would make project #1 helping your partner accept that he needs to tell his mother and sister as soon as possible, for many reasons. That is doing no more than you would for a friend. Also, assuming your daughter knows or will come to, she will need your support, however close or not she is with your partner.

Crying doesn't signify depth of your feelings, only how you express them in a given moment, and it is as much biological as choice.

Best,
Laurie
 

Diane123

New member
Joined
Feb 28, 2018
Messages
3
Reason
Friend was DX
Diagnosis
02/2018
Country
CA
State
Ontario
City
Toronto
Hi everyone, thank you for all your replies.
I don’t know what happened. I guess I was in shock that first day he was diagnosed, because the next day as I was walking into work, I had a late start, I kind of broke down and cried a bit and called him and told him I was sorry I wasn’t more emotional before. And that if I’m ever like that, it’s not because I don’t care, it’s just a coping method.

I did tell him that I would give him the support I could, but that I wouldn’t be able to be there full-time for him. And I needed him to lean on people other than me.

I have decided to ask my workace for an assistant, and cut my hours down by one day a week. Which I think they will agree to. That way if I have to take some time off, later down the line, someone is in the office.

I also told him I would advocate for him after he has a plan in place because he has very religious parents who would not necessarily agree with his wishes and he’ll need someone to step up for him in that way.

Their reason he’s avoiding telling his mother is she already lost a son to cancer, she also took my partner to a witch doctor when he was a kid. As far as she’s concerned, everything can me cured with honey, milk and a bit of voodoo. Her fussing stresses him to no end.
His sister lives in the house still and I think she’ll be strong for him.

Anyway, again, thanks for your replies. I appreciate the forum and will keep coming back.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
You seem like a strong person with her head on her shoulders. Come here anytime, tell us how it's going and how you're coping.

Much strength!
 
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