[Demora]

I have read a lot from those suffering with Lupus, and some friends and family that are just starting to learn about the disease. I would really like the opportunity to talk with someone who can maybe help in terms of how to explain things to my husband - who is trying to be supportive, but he does get resentful from time to time about the time I spend with my mom.

My mom is only 62 and she's been living in a skilled nursing facility for about 7 years now....and sometimes it kills me inside to drive away when she's sitting in the door waving at me. After all she's been through, in so many ways, she's very much like a child. And sometimes I sit in the parking lot and cry. And it's very hard for me to say no to her about anything - even if it seems unreasonable.

My mom has always been the strongest person I know, and still is. She refuses to give in to this, and the doctors often tell me that she's too fiesty to let it get her. The last couple of trips to ICU, that's what they've told me. I know there is going to be a time when her fiestiness is not enough and I will be lost.

Mom's birthday (hopefully this works)
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[wifajax]

Hi Demora!

I can really empathize with your situation. My mom has been battling autoimmune hepatitis for about 5 years. Although she isn't in a nursing facility yet, her health is definitely declining. She is having issues with confusion, slurred speech, small motor skills, and memory. I live quite far from my parents, and was shocked when my parents visited in May. Mom had aged 20 years in the 18 months since their previous visit.

My husband is very understanding, but my dad is really struggling to come to terms with her situation. He's frustrated because the doctors can't figure out what is causing her issues...they have only ruled out Alzheimer's and dementia. He is grieving for what she has lost, and angry that he cannot fix it. I've tried to get him to go to counseling, but he won't.

I don't have any words of wisdom to share, I just wanted to let you know that I'll be thinking of you.

Terri

 

[annada]

Hi Demora

I know how this can tug at your heart, I lost my Dad in February after many years battle with lymphoma, he too fought untill a blood clot during treatment was just too much for his weakened state he was in. My mother has my oldest brother living with her now and mom still misses her mate of nearly 60 yrs.. I just can't visit like I want and need to but I do talk to her on the phone nearly daily. This makes me feel almost guilty, you know, I try to do things like send little "care-packages" (lotions,cough drops,sockies) and such. We can't always be there but I do know that mom understands, she knows that I have a husband and children and grandkids. She knows I see her when I can and am well enough. Still, it's hard for me with her being over 3 hrs away and my body hates the trip. I am grateful my oldest brother can take care of her very well so she is not in assisted-living center, that makes a big difference and probably would add to my worrying about her too. See her when you can and call often and send things if you can.

Hugs to you

annada

 

[Demora]

Thanks for the repsonses and for the thoughts.

Terri, I like your quote! That's funny and I can soooo relate!!! LOL

Hugs to both of you as well.