Long rant about my Mom, her condition and prognosis and her boyfriend.

[Maraya1969]

I posted this on Friday after I spent the day in the emergency room with my Mom who just had a stroke. Unfortunately because she was alone by the time someone found her it was past the 4 hour window that they use to administer some drug that takes away the damage caused by the stroke.

http://www.democraticunderground.com/10024712551

Anyway I have been a mass of emotions since then and the one that outshines all the others is anger, (well there is also fear and frustration and sadness).

My Mom has lived with a man for the last 13 or so years. They are both in their 80’s now. He has had so many heart attacks and stints and clearing blockage it is amazing he is still alive. And to be truthful, because he is such a jackass and so mean to me that fact is not a happy one. I was kind of waiting for him to die so I could spend time with my mom with him not around, which he always is. He has said and done so many inappropriate and mean things to me if I told the whole story everyone would understand. I'll just share a couple things he has done since my Mom went into the hospital.

First I am pissed beyond belief that my mom has taken care of him and taken him to all his doctors and to his surgeries and the one fucking time he could have helped her he was in damn hospital having yet another heart attack. Thank God my mom went outside after having the stroke sometime during the night because one of her neighbors saw her, went over and called 911.

So in the emergency room I am seeing my mother there lying there without the ability to speak or hardly move and this fuckwad starts talking and talking and talking to me about stupid shit I couldn’t care less about. I wanted to just be by my mom’s bedside. I finally got away from him. I think he was pissed that he was not given power of attorney since he and my mother are not legally married. When he called later on that day he said real loud, “How’s my wife?” Well fuck you!

It doesn't sound like much yet but I really feel like getting it out. The next day we were both in her room. I had brought a boom box to play music for her because I read that it is very helpful. So I turn it on and stay there for awhile and then go to the nurses’ station to ask a question. I was gone for about 2 minutes and when I walked back in the room he had gone over and shut the music off. I said, “What did you do that for?” His reply was, “She doesn’t like it”, (not to mention that she can’t talk and also that the monitor had had a yellow line going across it saying “irregular heart beat” and that sign went away within 30 seconds of her hearing the music. Then I was showing her pictures and he was adamant that I take them back home with me because “someone will steal them”. Of course he is not doing a damn think except sit there with her.

Then he pulled his, “I don't know how your mother stands you” bullshit like he has in the past but this time I came back with, “None of us know how she stands you” (which is true).

Anyway the doctors and nurses were all very positive and would tell me that she said words and sang and walked and the day before yesterday when I was there she said my name twice very clearly. She laughed at Youtube videos I showed he and laughed at “Funniest Home Videos” But last night, (while the jackass was still there along with my brother and sister in law and I could tell with all the confusion and stress in the air she was not comfortable I asked the nurse if we could take her for a walk.

She said a bunch of stuff like how we would have to push the IV and monitors etc. And then she came into the room and in front of my mother said that because my mom had only said a few words and has not said sentences yet she will probably end up in a long term facility, (nursing home). I got the impression that she did not think my mom could recover.

One, I do not think it is a nurse’s job to tell such things to the patient. She has two damn doctors and neither has been that negative about my mom’s prognosis. The one has been pretty positive and the other I really didn't talk to long. And two what the Hell is she doing saying these things in my mother’s presence?

I was so furious when I left the hospital yesterday and it is only now that I can write about it. They say she has to stay in bed for 24 hours before they release her to the rehab but she keeps trying to get up and they have to tie her into the bed so she doesn't get out and fall. I would be going nuts too if I was in bed or in a chair except for physical therapy all day.

Thanks for letting me rant.

[LiberalEsto]

1. It sounds like you have a lot to be upset about

Wishing you comfort and peace during this extremely stressful time.

[pipi_k]

2. Sorry, but...

what, are you guys all like, 12 years old?


Geez, your poor mom is having a hell of a time in the hospital, and all she has to see and hear is a lot of bullshit between her boyfriend and her daughter?


One thing I would say about that is...if HE can't be the bigger, better person, then you need to be.

And even then...he's 80 years old, FGS. Sometimes people get real crotchedy and confused and unreasonable at that age.



Second thing I would say...if you're waiting for him to die before you spend time with your mom without him around, it might not happen. She could die before him...then where would you be? You'll have wasted precious time with her.


I think you and the boyfriend need to love your mom more than you hate each other.

[Maraya1969]

9. I have only mentioned one or two things that he has done. If you knew everything

you might feel differently. I have asked my mother several how he treats he when they are alone because he is an abusive person. I have seen and heard him be abusive verbally to her. He has one daughter and she has disowned him. I have had my mother's friends tell me they worry about her and can't stand him. I've heard him say mean things to my mother's grandkids, (like one time he said to a very young nephew when they were at the house and he walked into the garage, "What are you doing in here? You have no business being here" I took my nephew aside and tried to get him to realize it was all the boyfriend, he did nothing wrong and he was welcome there.

He is a petty, jealous, (of me and all of Mom's family) angry and abusive person. He has been like that since I have known him and based on the fact that his only daughter wants nothing to do with him I think it not just him being a "grouchy old man"

But thanks for you judgement anyway.

[pipi_k]

12. Well if he's been like that

a long time, then maybe it's not dementia.

Maybe he has a mental illness.

You think "normal" people act that way?

As far as the rest of it goes, a couple of others in this thread had some wise things to say about their relationship...abusive or not.

She chose him.


And...we're only getting one side of the story here. Yours.

There are always...always...more sides to every story.

My "judgement", if you want to call it that, comes from a place that is disgusted when two people use a third person to carry on their little squabbles with each other.

I stopped talking to a sister who ignored my wishes not to get our dying father involved in a squabble we were having with each other, and went ahead and did it anyway. This was in early 2002. He didn't need that shit. He died about 8 months later with a heavy heart knowing that two of his children could not get along.

So yeah...I'm a big old meanie.

[cyberswede]

3. Good lord.

I'm sorry you had to deal with that stuff, in addition to the stress of worrying about your mother. It's good that you can be there for her! But be sure to take care of yourself, too!

[shenmue]

4. Mercy

Sending good thoughts.

[840high]

5. Try to remeber this is about

your Mom - not you or the boyfriend. At this point in her life she comes first.

[magical thyme]

6. so sorry for all that you're going through...

As much as you hate your mother's boyfriend, remember that she chose to be with him. He couldn't help being in the hospital when she had her stroke.

You've managed in the past not to comeback to his rude and mean-spirited remarks to you. Now it is more important than ever that you not fight with him. Your mother is hearing this and it's not helping her.

He's in his 80s, he could be in dementia -- that can turn some people mean. They can't help themselves, and you can't stop him from being a jerk. But you can just tune him out. Keep your attention on the one you love.

[Yo_Mama]

7. I'm very sorry, but don't fight with him around your mother

It can't help her at all. She chose to be with him - that's that.

You can't tell how she'll recover, so don't borrow trouble. Just be there with her. And it seems like the boyfriend and your mom have some real connection, so try to understand that and don't try to block access. At least he cares enough to try to be there! He cannot help that he was in the hospital when this happened. You cannot blame him for that.

I will pray for you and for her. I understand the pain you must be feeling, and it is a huge load to carry in a very pressured situation. Your feelings are all very understandable.

[Maraya1969]

10. I have not blocked access to him. I just want to make sure we go at different times.

[Yo_Mama]

15. Very sensible! n/t

[marions ghost]

8. Don't believe that your mother can't recover. She can.

Make sure the rehab place is doing what they say they will do. I understand completely and have been in the situation myself. Unfortunately in my case he WAS married to her. Made it much worse.

Be there for your Mom. You should be able to figure out times when you can visit her that he is not there. Or if possible, ask him to give you the courtesy of a window when he won't be there.

You should be able to have a visitation time to yourself with her. Avoid him.

[uppityperson]

11. Best wishes to your mom and to you during this scary trying time.

Rant on here if it helps. We will listen and send good thoughts your way.

[politicat]

13. Take lots of deep breaths.

I am so there with you, just 18 months further down the road and it's my grandmother, not my mother, but I'm still the responsible one. This is going to suck, and it will continue to suck for a while, but it's a Winston Churchill sort of hell -- when you're going through it, KEEP GOING.

It's okay to be scared. Your fear may be disguised as anger right now -- they do go together. You're probably tired and feel like you're running on fumes. Being angry feels like filling your emotional energy tank. Unfortunately, it's really bad fuel, and it's addictive. Try to use it as little as possible. Your mom is in good hands at her hospital. What will happen will happen, whether you're there or not. You can't control her brain, or her cardiovascular system. It's okay to take the night off, relax and step back.

My Gran's stroke was under-diagnosed. It was a much worse stroke than it looked like initially, but it didn't affect her speech much or either side of her body (she has some difficulty with one leg) so they thought it was mild. Instead, she lost significant short-term memory, a lot of her decision making capacity, and she emotionally regressed to about age 10, with post-stroke depression and an inability to recognize her own diminished capacity. She also lost her ability to self-motivate, which means that in the 18 months since, her physical condition has deteriorated because she literally cannot make the decision to take a walk or go down to the exercise room. Someone has to remind her, and for the first year after the stroke, there was nobody doing that. These are things you should watch for, especially if your mom had a basal ganglia stroke.

Being in rehab will help. As for the nurse, take her aside and ask her not to make prognoses in front of your mother. That really is for her neurologist and occupational, speech and physical therapists to determine. Plus, it's too soon. Try to say it as neutrally as possible, and just walk away from her. She's not going to follow your mother into rehab, so let it go. You won't have to deal with her again.

With regards to boyfriend... Your mom made specific choices -- one, to have him in her life, and two, to limit his place in her life by not marrying him. I'm assuming she designated you her medical attorney in fact or general attorney in fact rather than this being a next of kin situation. If you have the legal designation, then you know whom your mother trusted to care for her. (If it's just a next of kin, then the fact that she didn't change it says something, too.) You must respect those choices.

In terms of practicality, if you are fully responsible, you now need to know the full extent of their entanglement -- joint bank or credit accounts? Who owns their residence, or do they rent? Who's on the mortgage/lease? Who handles the bills? Whose name is on the utilities? My personal suggestion is that once you know the extent of her future likely capabilities, you start disentangling them. She will need her money eventually. If you have a written general power of attorney, go to her bank with it in hand, and have a copy placed in her file (you may also be added to her account as her POA so that you can access her online banking). NEVER give away your original, signed and notarized copy of the POA. (You will also have to send her POA to anyone with whom she has a financial relationship -- creditors, service providers and medical. Make a ton of copies, scan the original and stick the original in a safety deposit box.) Get copies of her bank statements for the last year and get them into audit. (You can hand this off to a third party, like a professional bookkeeper or accountant.) If you don't have that POA, you cannot get it now, because she may not be competent to sign it. If that's the case, you may have to apply for conservatorship, and that is a massive can of worms.

There is a very good chance that your mother may need some sort of care for the rest of her life. That may be as light as having home health twice a week, Meals on Wheels, occasional driving and a housekeeper come in once a week, to having a companion to keep an eye on her, do the housekeeping and cooking, or up to and including assisted living or long-term care. You won't know until about half-way through her time in rehab. In reviewing my grandmother's case, I suggest you do your best to keep her in an environment where she is surrounded by her intellectual and physical peers or betters (if she can still play games and talk, make sure everyone else around her can, too.) My grandmother started in rehab, had to spend a month in Long Term Care before I found her an assisted living that could take her. That month of long term care (where she was surrounded by people who could not talk, walk or remember) did as much damage as the stroke. Social isolation is devastating in a post-stroke situation. She's doing better in assisted living. Your state laws will govern what level of care she gets -- I moved my grandmother from her state to mine because a) I couldn't be responsible from the 1000+ miles away, and b) her state allowed some things that mine considers abuse. (Pressure alarms, specifically, and restraints. Those are bad things.)

You should also figure out who is the responsible party for her boyfriend, if he has an equal number of health problems. His POA and you might be able to cooperate for their collective care -- each of you pay half of their companion's salary, coordinate and switch off on doctor's appointments, groceries, et cetera. Keeping people in their home is a good solution if possible, but a lot of the elderly have elderly houses that need expensive care to be safe for a physically fragile person. There are times when an assisted living apartment is the best option.

You don't have to answer this to me, but here's a thing to think about: has boyfriend's behavior changed over the years? Has he gotten more difficult to be around, more abusive, more controlling? If so, if you can chalk that up to his cardiac problems causing brain damage, then accept that it's not him, but the disease. If he's always been a jerk, well... Does he have the most important quality in a parent's SO? Does he make your mother happy? If that's the case, then you deal with it by focusing on your mother, ignoring his BS, and defining your boundaries. (My personal boundaries with my grandmother are to let her facility handle 95% of her care, to be physically there for a specific amount of time per week and to not interfere with her personal relationship with her fella as long as it doesn't have anything to do with money or questionable consent. Since she does not have the mental ability to consent, that is a boundary I had to put in place.) Yes, there will be days when you will walk out, get in your car, drive one block, and scream and cry with frustration (just pull over when that happens.) That's fine. It's expected. But he is not your problem, unless he becomes physically, emotionally, financially or sexually abusive or exploitative. If any of those happen, then if you are her legally responsible party, you may step in and erect a wall. (In my grandmother's case, her emotionally iffy boyfriend is a couple of states away, so I just let them have their phone fun, and I stay out of it, but if they are ever physically together, then old-school dorm rules are in place -- he can't take her anywhere without a chaperone, her door needs to remain open while he's in her apartment. Consent... It's a thing. It is NOT a squick issue -- it's that she has a permanent case of being rufie'd. She cannot consent.)

As for your family (you mentioned siblings), it is long past time to have a family conference where you figure out what is your path forward. I will tell you this -- your siblings will likely not be the problem, but your siblings-in-law may be. They have fewer emotional ties, and their loyalties are differently complicated. It's in your best interests as siblings to agree that you can fight amongst yourselves to reach a mutually agreeable compromise but you must present a united front, and your collective decisions are yours, yours alone and final, that you will compromise with each other in your mother's best interest, and your spouses don't have a vote. If your siblings cannot agree to that at the outset, I recommend walking away entirely, because otherwise, you will fight, and fight and it wreck your relationships. In my experience, it is best to make the decision now about what goes forward. If your mom has a will or a trust, look at it now, because that is the document that will guide you going forward. The best solution I have found is to plan for my grandmother to die broke, but not in debt. That way, there's nothing to fight over. If your mother has different plans (which should be in her will/trust, if she has one), then you have to abide by those.

You need to start thinking end of life, if your mother hasn't already made these decisions. (DNR, Living Will, Advanced Directive.) The first stroke (if this is the first) usually means there are more, or TIAs, coming. Once the brain takes damage, repair is unlikely. If you know your mother's wishes (no artificial hydration or no CPR or sustain everything), then follow those wishes. If you don't, then you and your sibs need to figure out what you are comfortable with. My grandmother was a geriatrics nurse, so we have pretty specific instructions. Also, check on funeral info -- she may have prepaid or pre-arranged, or now is the time to start planning that. The more you can do in the next few months, the better off you all will be.

And last: if this sounds overwhelming, and you're scared or uncertain, congratulations. You're realizing how difficult this will be. I call it the worst aspects of having an infant, a toddler and surly, pubescent teen all in one, fragile, failing body. It is fine, laudable even, to abdicate. I didn't get the choice to be my grandmother's responsible party -- she just designated me and I didn't find out until several years later. By then it was too late -- she was already having cognitive issues. It's not that I don't care for my grandmother -- I do -- but her actions were unfair and ethically iffy. Thus, it's critical for everyone involved to build procedures and fail-safe plans so that everybody has both access and respite. The more transparent your family is, the better, and it's reasonable and sensible to hire someone to help you negotiate and mediate your planning going forward. (Some psychologists and family counselors will do this.) And remember -- you cannot help anyone else if you make yourself a casualty, so schedule in your time for relaxation, regeneration and play FIRST.

Feel free to PM me any time, for anything. I have dozens of very specific strategies and protocols that have evolved into working policies. I'm happy to share, if you need it, and I'm also good for venting.

[Maraya1969]

16. Thank you for that information. I will bookmark this thread to refer to it. I have a feeling

now that my brother went through my mom's things today which is OK. We are going to meet tomorrow. I have power of attorney at the hospital but I don't know who has it in the long run. But my mom is very organized and has given me a living will and I have a copy of the family trust.

[Arugula Latte]

14. I'm very sorry.

I can relate somewhat. My 80+ year-old mother has a boyfriend I can't stand. I do wish he'd just drop dead so I can have some time with the mother I thought I knew -- one who wouldn't go out with an ignorant, racist rightwing jackass.

I am terrified that they will get married, something will happen to incapacitate one or the other, and his kids will move in and take over the money I am counting on to take care of my mother in her late old age.

I am very sorry about your mom's stroke and I send my best wishes for a recovery for her.