A whine about me mam

Miscellaneous and Personal Stuff I Must Share
1

It’s 57°F, the sun is shining, all the windows in the house are open and the birds are singing, and yet I am blue. It’s not the marriage that went sour, nor the bad experience with the guy who grew up in Beverly Hills, it’s my mom.

I moved back home 14 months ago from Kodiak, where I had been living for the past 22 years because my mom is in end stage liver disease and she took herself off the transplant list for a couple of reasons, one of which being she wants to be able to drink. I understand alcoholism, lived with various family members, friends and men who were/are alcoholics. All my life my mom drank so little that I would have represented her as a teetotaler and not felt that I was telling a lie.

Mom was diagnosed in 1962 with sle (systemic lupus erythematosis). I was two years old and had baby brothers who were born in 1961 and 1962. I feel I have lived my life with sle, and I have symptoms, but my dr told me that he didn’t want to dx me because I would have trouble getting and keeping insurance.

In 1976 my mom’s sle went into remission. Somewhere between then and 1978 she found God and decided that she was not in remission, but had been divinely healed. I am not mocking Christianity, I am a Christian. I just allow God more leeway that fundamentalists do.

So it’s been three years since she took herself off the transplant list. She will not take her frakken meds. One in particular, lactalose, is to clean the ammonia that accumulates in her brain because her liver isn’t cleaning her blood. I understand that it gives her diarrhea, and that she has to wear adult diapers and that it’s embarrassing and maddening, but damn if it isn’t trashing her personality. I have watched her cross a room, pause on the edge of another room and wring her hands repeatedly as her gaze goes unfocused as she is trying to remember what she was going to do, and cannot. Sometimes when she calls me I would not recognize her if I hadn’t checked the caller id. She sleeps all the time, and is generally “out of it”
to the effect that she can no longer hold a conversation for long before she (mentally) wanders away for a while.

She won’t eat, either. When the family goes out to dinner (often) or they come to my house for some home cooking, my dad eats and mom drinks. If it’s my house she has taken to bringing her wine since I began to not serve any when she was coming, or margaritas is we are out. I have begun ragging on her about eating, and my (step)dad is so happy because he is so frustrated. She yelled at me to not treat her like a child. I told her that if she wasn’t acting childish she wouldn’t need to worry about being treated as one, and that I am not treating her as a child, I just want her to be strong enough so she doesn’t leave me sooner than she has to.

I am so frustrated and sad and alone. My brothers are useless, seriously. To the point that they are disinherited. My (step)sister is ten years younger than I am, and while she is “there” for me, I am still the oldest, and when the shit hits the fan, guess who is and will be there.

I admit freely that I am whining. I expect that I will be coming here to whine more often as she declines. My dad is declining as well, I don’t think the one will outlive the other for very long.

I need a hug.

Thanks you in advance, I know the value of a doper hug.

2

Aww, sweetie, lots of hugs and good thoughts coming your way.

Hang in there.

3

Darlin’, you’ve got hugs from me, anytime you need them!
I understand. I wish you, and your family, the very best.

4

hugs from me too ~

i lost my husband to primary liver cancer…

5

I’m sorry you’re going through all this.

Big hugs from me.

6

{{{{{{{big old aussie hugs}}}}}}}} from me

7

Would she consider home hospice? If she’s really end stage in her liver disease (and the need for lactulose suggests she is) it could be a good approach. Any and all treatment would be aimed at making her comfortable, as opposed to making her well, since the latter approach is unlikely to make an end-stage individual significantly better.

Most home hospice services work closely with the family too, and can help deal with the stressors of such a situation.

And one needn’t be at deaths’ door to qualify, either. Home hospice care can last a year or more.

Just a thought…

8

(((((moorland reiver)))))

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(((((((hugs)))))))

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sends you lots of hugs and good thoughts. I’m sorry you are going through this.

11

You can have all the hugs you want from me - wish there was more I could do.

The transitions in our relationships with our parents can be unnerving. Like when you find out your parents don’t know all the answers, or when you see your parents scared or crying or really sick, or when your parents need your advice and guidance, and finally when your parents need you to be the strong one, the responsible one, the parental one… We never want things to come to that, but we pretty much accept that they will. Not that logic and understanding have anything to do with dealings between parent and child.

So what do we do? The best that we can until we can’t do any more, then we seek help, like **Qadgop **suggested. Don’t burn yourself out, sweetie, and don’t try to be SuperDaughter. Figure out how much you’ve got to give, then find another source for whatever else is needed. And whine all you want here - it may seem mundane and pointless, but it may also help you stay sane.

{{{{{kai}}}}}

12

Thank you everyone, it’s helpful just to share, the hugs help too.

Qadgop the Mercotan thanks for your opinion. I will ask dad how he feels about it, but I am skeptical of mom’s acceptance. She is quite jaundiced, and has a lot of fluid in her abdomen and legs. She has a pharmacy of medications that she takes sporadically at best. The reason I moved home from Kodiak is to help her die in her own bed, if possible. Perhaps there is some organization that can help dad, he is so tired, and has his own health issues. (cardiac and the re-occurrence of his prostate cancer)

This bit of life really bites, is all.

13

I think Quadgop was talking about home hospice, where folks come into your home to help. The level of service varies. What’s covered by insurance varies, too.

My aunt died at home under hospice care. She was bedbound, so she had to have an attendant 24/7. Her husband was there, but he was frail and wheelchair bound. It was expensive and not covered by their insurance. Once they had spent their savings down, they would have qualified for MediCal, but she didn’t last anywhere near that long.

Maybe I should be more specific. Insurance wouldn’t pay for the attendants, who also cleaned and cooked. It paid for renting the hospital bed, for the nurse visits, for medications, for doctor appointments, and for other medical equipment and supplies. There may be volunteer helpers in your area, especially for respite care.

It’s been years since I had to deal with it, but IIRC, switching to official hospice care changes what some insurance policies will cover. It can change what sort of public assistance you qualify for. It can change which meds are prescribed, and how strongly a health care worker will press a patient to take them.

Doctors are often reluctant to suggest switching to hospice care, because it can frighten and depress people. My aunt’s doctor was releived when we suggested it, but I don’t think he would ever have brought it up on his own.

14

I would second this. When my mother was in the end stage of liver cancer, we had home hospice for her. It cheered her to be at home with us instead of at a hospital where she could only see us intermittently.

Wish you the best moorland.

15

Check out their church if they belong to a large one, as well as Catholic Charities (I think that’s the right name over there), for non-for-profits. And speak to Social Services or Social Security (I find that people tend to find these less scary, and they have the information) about government services.

{{{{{{{{kai}}}}}}}

16

((hugs))

17

Thank you, thank you, I really needed to come back here tonight and read the posts. Everyone is so supportive and informative and the hugs are very welcome.

Dad brought mom over to spend the day. I am exhausted. We covered a lot of ground, and I will come back tomorrow and report how that went. It was a fricken roller coaster ride of emotions.

You guys are great, thanks again.

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{{{{{{{{{{{{{{{{{kai}}}}}}}}}}}}}}}}}}}

19

Sending good thoughts your way.

20

Tsunami of hugs and good wishes coming your way.

Thinking of you!