Wellness

[mistriTsquirrel]

On 4/5/2014 lolakimono said:

Mistri,

Here are a few pieces of (unsolicited) advice.

1) Get your dad some Depends. Then if something happens there will be no "urgency" to get to the bathroom if he is moving slowly or a caregiver is not around.

2) Consider doing something with the dog. Instead of moving in with them, could you take the dog to your place? Could the dog be kept in a bedroom or in the basement so that you can open up the house and your dad could have access to all areas?

3) I don't know about changing the healthcare directives because in your state the spouse's wishes may "trump" those of a child.

4) If you have a social worker (or hospice) come out , a neutral "third party" evaluation might be able to convince your mother that the house is not safe for him right now, so she needs to make changes or they will have to find a place for him outside the home.

Hi, lolakimono!!!

I guess I'll go ahead and number my responses as well, for the sake of clarity...

1) He is already wearing Depends; he also has a little urinal container next to his hospital bed that he is supposed to pee in. He still insists on getting out of bed and going to the bathroom to pee, even though he knows he isn't supposed to leave the bed without assistance. They even set an alarm on his bed so that he cannot get out of bed without them knowing. He's bound and determined to do so, however, so the nursing staff has to go to his room each and every time he gets up and sets off the alarm...several times throughout the night. And it doesn't matter if my mom, brother and I are there...he still attempts to get out of bed, even when we tell him to stop. We have to either block him from getting up out of bed while we wait for a nurse, or help him to the bathroom.

2) The dog is his best friend. He talks about her quite a bit, says he misses her, etc., so we don't want to deprive him of her. Also, it isn't an option for me to not move in with them, because my mom is overwhelmed, depressed and barely able to take care of her own basic needs. She needs help taking care of him; if she doesn't get help from me and a nurse, she will put him in a home.

3) As far as the healthcare directives...he can change them if he wants to, because he is coherent. At this point, he is speaking clearly, answering questions with sensible--and often witty--answers. He is ill, but he is definitely "with it" enough to decide who he trusts to carry out his wishes.

4) I don't think my mom wants to keep him at home, so she has little or no motivation to make his environment safe...and a poor assessment of the safety of their home would only support her desire to ship him off to an institution. However, my brother and I know that our dad wants to die at home, and we aren't willing to allow my mother to bully my father into a home or a hospice facility.

[mistriTsquirrel]

Things are getting darker.

My father won't be coming home from the hospital today; I honestly don't know if he ever will.

I talked with my brother at length after I worked my Sunday night shift. He told me something that shocked me more than anything he's ever said...and I am concerned about some of the things he said.

I used to think of myself as the black sheep of the family...the one who ""failed"" to thrive.

It has taken my father's illness to illuminate the truth: I'm not any sicker than they are; they aren't more functional than I am...it just appeared that way.

[lolakimono]

Mistri,

I'm sorry to hear that he's taken a turn for the worse. Is he too weak to come home or has something new developed?

[mistriTsquirrel]

He has a blood clot in his carotid artery, and fluid in his lungs. They are giving him a blood thinner to dissolve the clot, and they can't drain the fluid while he's on the blood thinner because they are afraid he will bleed out when they are draining the pockets of fluid. I feel a little bit more hopeful today than I did yesterday about him coming home, because I got to see him, and he seems to be doing relatively well...but I know he is still in danger.

Today he got up from his hospital bed again, even though he isn't supposed to. His port was ripped out in the process. My mom found out and she was livid. She said she won't be bringing him home if he won't listen. My brother and I try to explain to her that he isn't trying to be a PITA, he's just sick...but she treats him like he "deserves what he gets" if he defies her and/or the medical staff. She told me that she doesn't care what my brother and I say, "he's doing it on purpose!"

The man is dying of cancer, has had multiple strokes, and he is in denial about how sick he is...and she's mad at him. She wouldn't even go see him in the hospital today because she was mad. (I asked her if she thought that was a reasonable reaction to the situation, and she changed the subject.) He asked if she was coming to visit, and I told him not today...that she was mad that he ripped his port out. Now she's mad that I told him that. I don't care if she's mad about that though. I spoke with him and made sure he knew that--once he was discharged--he could go home or he could stay at my house if he wanted to. I also stopped the social worker at the hospital and made sure that my father's wishes had been made crystal clear, and that my mom wouldn't be able to send him off to some facility if he was medically able to stay at home and didn't want to go (my father was present to confirm his wishes).

I wound up telling my mom that if she doesn't want to participate in his care, no one will force her to...but he has a right to stay in his own home if he is medically able. She said she would participate in his care, but if he fell and broke his leg while she was in the bathroom because he didn't listen to orders, she didn't want to hear any complaints about it. I said "fine." She said, "I'm serious, I don't want to hear it." I said, "you won't." See sighed, said bye and hung up.

We just spoke again. I told her that if she doesn't want to participate in his care, or she is going to be yelling at him that I would prefer she not care for him. I told her I would move into their house and she could move into mine. I said that all I asked is that she not try to freeze funds for his care and other costs, and that she let the dog stay at their house because he enjoys the dog so much. Then she acted like I was laying a guilt trip on her; I do think that she should feel guilty...however, I don't want her around if she is going to yell and scream at him while he's dying. He worked extra years that he didn't want to--at her urging--so they would have more money saved for retirement. (She hasn't worked in years, by the way.) I can't force her to care about his feelings, but he deserves to be able to live out his remaining time in his home in peace, if at all possible. I will not allow her to bully him into a rest home if he wants to go home, and is able.

I am angry about her selfish behavior. I'm also very, very depressed. Part of the problem is, I see myself fighting for/against parents who didn't take care of me at times when I was very ill--as a child, and into my early 20s. My mother would scream at me to get up, to get out of the bathroom, etc. when I was ill and needed help. Now she is doing it to my dad. If my mom was the terminally ill one, my dad would do little or nothing to tend to her as well...I'm sure of it. But I would be an advocate/nurse for either one of them. My dad just happened to draw the short straw.

I think what makes me feel the most alone is the fact that if I were the one dying of cancer, neither one of them would tend to me. My father would sit on the couch while my mom yelled at me for getting vomit on the carpeting or something like that. If I get sick, there will be no one to take care of me. My brother has a wife and children...and there isn't anyone else. When I really think about it, I would probably be best off going into some sort of home anyway...because I wouldn't have someone screaming at me all the time, and the nurses would probably be more caring than either of my parents are. It makes me feel extremely sad and unloved to say that...but it's true. I don't believe my parents love me...because I don't believe that they know what love is.

A long time ago, my mother was more caring...but something in her broke, and she is no longer the caring person she was when I was very small. She says my father is responsible for that, and I understand why she says that...except for the fact that she could've divorced him. She has given me many "reasons" why she didn't leave him, and only one of them seemed legit to me (she knew my father wouldn't pay for college for my brother and I if she left him), the other "reasons" are all excuses. I keep telling her that she can only be happy if she reaches out for help for herself. She says it's too late.

I feel sorry for both of them in a way...but they really had no business having children. I guess it's good for them that they did.

I never knew until last night that my brother was suicidal for much of his childhood, teens and 20s. My parents knew. They didn't do much to help him either.

I have no idea how my brother and I turned out to be caring...I really don't. I suppose maybe both of my parents used to be, and they just snapped at some point. I hope my brother and I are able to handle things better, but I'm worried about my brother having a nervous breakdown. He talks to me about things that seem like they could be real...or they might not be. I generally take what he tells me at face value, but I'm starting to see what is behind his formerly strong facade. He told me he has had episodes of dissociation (fugue), where he doesn't know who he is, where he is or what he is there for...and he's also "come to" after driving hours away from home, only to realize that he has no idea what happened to the past few hours or where he is. He also told me what--for the most part--made him suicidal for all those years. I don't feel I should talk about it here, but I was more shocked than I've ever been in my life when he told me. I guess I put my brother in a category that wasn't accurate, thinking that he wasn't struggling as much as I have been, because it didn't show. The past few years have really worn him down though, and I think he needed to air things out finally. I'm glad he did, because I was already worried about what I was starting to see (hair loss, really dark circles under his eyes, drinking a lot during visits). Now I know that he just had a different way of dealing with his agony...and it looked like strength for awhile.

We are all very damaged and depressed people. The difference between me and the rest of my family, I feel, is that I am doing the work to try to get better (I have been for years). My father's illness has illuminated a lot of things for me, and I have learned a lot by watching him too. He hasn't complained at all during the entire time he's been sick. If he mentions something hurts or is uncomfortable, it's because we keep asking him what's wrong. I realize that my father's graceful handling of the situation can, in part, be attributed to his denial...but I see value in his approach, regardless of its source. (I guess I'll have to figure out how to adopt that approach somehow...right now my grace is present at times, but fleeting.) My dad jokes with the hospital staff and he is a very agreeable patient. His getting out of bed against orders is the only problem. I tried to explain to my mom that he gets up on his own because he doesn't believe he's that sick, or that he needs assistance to avoid falling. She said, "of course he knows he's sick." I said, "he knows it, but he doesn't believe it. Think about it...he's been in denial this whole time. Denial doesn't just go away. When he's getting out of bed on his own, he's doing it with this belief in mind: 'I'm not that sick.' He can't handle the reality of how sick he is, so he's denying it to himself...and that is why he finds it acceptable to get up and go to the bathroom on his own, even though he knows he 'isn't supposed to.' Please think about it." I really hope she does. When I referred to him as a man who is "dying," she had to get off of the phone...because there is plenty of denial on her end as well. My brother jokes that he hopes denial isn't hereditary.

I'm thinking about making a sign like this one...

[aziza udoja]

My precious friend Mistri, How ya doin' kiddo?How are YOU holding up these days?

[aziza udoja]

Mistri, Something just came up-I will check back in with you in 1 1/2 hours.I am sorry,but it is an emergency. In the interim,hang in there.I'll be back. :-)

[mistriTsquirrel]

On 4/7/2014 aziza udoja said: My precious friend Mistri, How ya doin' kiddo?How are YOU holding up these days?

Hi, aziza!!

My last post pretty much sums up how things are going right now, so if you feel like reading a depressing novella, you are in for a treat. ()

I'm not sure if I'll pop back in tonight or not. I'm kind of exhausted regarding the situation with my family, so I may move on to others topics and leave this one alone for the rest of the night...

Thanks for your concern. I'll post to you again soon.

Love,

mistri

[Deb1010again]

Hey Mistri - I followed you here from the other thread as you mentioned. Oh my dear, I am so so sorry for all you are going thru and that you never had the appropriate attention paid to you by your parents. I understand more than you know... but I don't want to go into it here. Suffice it to say your childhood sounds similar in many ways. My parents have TOTALLY changed as they've aged -- thank G-d. They care more for each other and express much more to me and my siblings.

Your reaction to everything you are facing is totally normal. The one suggestion I have is to take it one day at a time. You seem to worry very much about what might happen and take it all the way to its most alarming and bad outcome. Maybe you can try a different approach and give your mom encouragement rather than bringing up the worst case scenario and how she'll act uncaringly. Regarding your situation, it is what it is. In the end you can't fight city hall. Do what you can and try to be as positive as you can. Internalize the Serenity Prayer.

I hope maybe something I've typed has helped you out in some way. At least know that I am reading your posts and I'll be here for you unless something catastrophic happens to me.

[pistolino]

Oh Mistri--some thoughts here.

Your mom, as you can see, has no ability to empathize with your father. He can't help what he does.

Because of this, taking care of him at home is going to be challenging for the rest of you and possibly detrimental to your dad.

She thinks he has a purpose to everything he does, he is frail and to have your mother "in charge" of his welfare is concerning. Although he can have hospice at home, the hospice people will not be there all the time. The only 24/7 coverage you get is when he is in the actively dying phase. This means family is in charge of looking for changes, medicating for pain or agitation, and caring for all the needs he has.

Please keep an open mind as to inpatient hospice or even a skilled nursing facility, and please visit them yourself. A good facility can actually be a buffer between your mother and your dad. She will have to be on her best behavior (they won't allow her to speak to him harshly or leave him to his own devices if he falls). His needs will be cared for 24/7 by professionals who really do care. My mother spent the last 3 years of her life in a nursing home with dementia. The night before she died, 3 shifts of aides and nurses came to tell her goodbye and tell her how much they were going to miss her (she was unconscious). Most wanted to be called at home when she passed. They really cared for her in their hearts, and it's one of the things that gives me peace about her illness and death, that I put her in capable and caring hands.

[mrs baggins]

I, too, have struggled with depression, at times actually sitting down and writing my own obituary. The one thing I can suggest is a pet. My cats kept me going during the worst of times. I had to take care of them. And they, in turn, I think, took care of me. And like you, I, too, don't believe in religion. Good luck, and please reach out when you feel the need.