Wellness

[mistriTsquirrel]

On 4/16/2014 CouponQueen said:

your a good person Mistris!!

Thanks, CouponQueen.

I try to be a good squirrel most of the time.

[mistriTsquirrel]

On 4/16/2014 bikerbabe said:

Mistri,

Your mother reminds me very much of my BFF's mother. Mean and self-absorbed. (Sorry.) When BFF's dad was dying from cancer and Parkinson's, her mother moaned and groaned and went on about how hard it was for her doing it all alone (not true AT ALL, BFF and her sister were there daily), she berated him in front of others and made it all about her. She refused for the longest time to let him use a walker in public because it embarrassed her, would not arrange the home to make it easier for him to get around, on and on and on. SHe really tortured the poor man. It's no wonder he wanted to die sooner rather than later. But love is blind and he loved his wife dearly.

It's not that BFF's mom didn't love at all but her capacity for love was certainly limited. BFF never received love from her mom the way you'd expect a mother to show love. She did she love through cooking. My BFF had lots of psych counseling over the years. SHe's told me that the biggest gift she ever gave herself was recognizing that her mom would never be able to show her love the way she wanted to receive it and she had to accept her mom for who she was and how she did express it. It didn't mean that BFF wanted to spend a lot of time around her mom, she just found a way to accept her for who she was and found peace in that recognition.

Yeah, I had a psych professor I confided in tell me that my mother would never be the mother I wanted her to be. I was a freshman in college at the time. I knew he was right, and I cried, but I needed to hear it.

As I sit here in one of their bedrooms, I look around and see two expensive comforter sets, still in their packages. There is a t.v. stand with unused items on/in it. When I open the closet, it is filled with items still in their packaging. Clothes with tags on them hang inside, and on the outside on over-the-door hooks. In my parents bedroom, there is an expensive coffeemaker my mom purchased for my brother and sister-in-law that she didn't return after they told her they don't really drink coffee anymore. There are other items still in their packaging in their walk-in closet, in their bathroom, in the fourth bedroom, in the dining room and in the family room, as well as in the basement. A glossy black refrigerator sits in the garage, nearly new, because my mom thought it wasn't big enough after using it for maybe a year (it isn't big enough because no one ever cleans out the refrigerator). She also threw out a queen mattress and box springs that was nearly new because she discovered that downsizing from a king wasn't a good idea after she and my dad slept on it for a month or so. (I tried to use it, but it was too hard.)

I asked my mom if we could pay for a nurse to come in 8 hours a day. She said it's too expensive.

My dad wants a massage chair; she said no, they're too expensive, and what will she do with it after he dies.

She is so self-absorbed it's nearly intolerable.

My dad will get his massage chair after I go look at some, then take him and his credit card to the store. He worked his whole life away while she spent a good deal of that time out shopping with the money he made. He deserves a frickin' massage chair, and I'm not going to let her bully him out of it.

[mistriTsquirrel]

On 4/16/2014 pistolino said:

Mistri, I understand about the hospice issue. One great thing about hospice is there is a chaplain (not overtly religious) who will sit and talk with your dad if he decides he'd like to talk but not burden his family with talk about life or death or whatever.

Ours was wonderful--because my mom had such limited understanding and was practically nonverbal, he would sing to her--and he discovered she liked TV theme songs so he'd sit and sing those. She would smile or clap.

Your mom--I may have missed it but it almost sounds like a personality disorder with the behavior and the twisting of things. Exhausting to deal with.

I think you're doing fine with giving of yourself to your dad and fending off your mother's negative stuff - and I'm sure you'll do fine advocating for what he wants.

When someone becomes very ill, sometimes you find out how UNcaring other people can be. I no longer have any relationship with my brother because of his lack of interest in my mother at the end of her life.

Stay strong and stay rested if you can, it's a long haul.

Thanks, pistolino.

I'm pretty sure my mom has a personality disorder. She has narcissistic, histrionic and borderline tendencies, but I think she would primarily be diagnosed as borderline.

Anyway, we have an appointment scheduled with my dad's oncologist. My mother left a message for the oncologist's nurse practitioner today about having him assessed for hospice. I know he won't want to hear the word "hospice," but he's suffering so much...it's so painful to watch that I can't imagine how painful it must be to be the one experiencing it. I'm scared about him hearing the word "hospice" though. He looked at me today and said, "I don't know why I feel so bad." It's heartbreaking...it truly is.

[mistriTsquirrel]

On 4/16/2014 2000survivor said: I haven't read all the posts...I've read enough to benefit from ideas, suggestions, and to not feel like I'm the only one. May God Bless each person who reached out to help mistri, as you did you have helped me and others.

I'm glad you are benefitting from this thread, survivor. It has been a big help to me...I've even been given suggestions I hadn't heard of before. And, of course, there are all of the kindred souls who have shared their own stories.

I originally intended to respond to each and every post, but life had other plans for me, I guess. I am thankful to all who responded with kindness, helpful suggestions and their own stories. It's been almost a year since I started this thread, and it's hard for me to believe where I am now, and where my family is.

Last year I was in limbo.

Now my family is in crisis, but I have learned a lot along the way.

This thread is a record of the past year in one depressed squirrel's life...and I think what makes me different than before is that I realize my life has a purpose (more than one, actually).

I hope other people who are struggling can find their purpose...although I hope they don't have to experience tragic things to make their realizations.

[mistriTsquirrel]

On 4/18/2014 Deb1010again said:

Hey Mistri - I loved the story you shared about the dog and making break for it to go see your dad. just adorable!

I hope you're doing OK. We haven't heard from you in a couple of days and was just checking in to see if you've updated anything. I hope all is going as well as possible and you're holding up and taking care of you.

Thanks, Deb!!

It's been really hard. I knew it would be hard to live under the same roof with my mother again, and I knew it would be hard to watch my dad get sicker and sicker...but I didn't realize how heartbreaking it would be to watch my dad suffer. It's almost too hard to bear at times, but he is such a trooper. Sometimes a tear or two will escape my eye when I'm rubbing his back, or lying in the bed with him because I'm tired but I want to be close by if he needs anything. I don't let him know I cry though, because I don't want him to feel uncomfortable (he isn't comfortable with crying).

My mom is looking after him at the moment, but I still want to check in on him. Last night she gave him his Ativan, and two Xanax...along with his Vicodin. Granted, they are all low dosages, but I feel like she shouldn't be making those sorts of decisions without consulting a doctor first. I was mad, but he was up until 11 am...so I guess she was desperate to get him to sleep after watching him suffer for hours. (Last night was the first night "shift" she had with him. I'd tried telling her that he wasn't getting any sleep and he was suffering all night, but she dismissed what I said, like it was no big deal. Then when I got the report of how the night went on her watch, suddenly she'd seen the light. ) I really think we need hospice to get involved soon; I hope my dad's oncologist agrees.

[AuntG]

Mistri, it is painful for me to read about your mother, so I don't know how you are doing it without going crazy. Obviously, you do it for your father. I dread to think of what would have happened if you were not there for him. The best words I saw from you were that you will be getting away from your mother once he is at rest.

[pistolino]

Mistri---one suggestion if you decide to bring on hospice at home. They leave what they call a "comfort kit" to be used in case there is some breakthrough pain or agitation (he will probably be on a scheduled morphine dose, but this kit would be kind of an extra supply if needed).

Because she doesn't bother to check with anyone and medicates more for her own convenience than your dad's, it would be better if she wasn't the keeper of that kit, KWIM?

If she decides he needs more morphine, she could actually kill him (just going by your description of what she gave him). She also could get it into her head that he'd be "better off" .... ugh I don't even want to say.

Find out what's in the kit and perhaps you can leave her with 1 extra dose of something in case he is having pain, but to allow her to keep the whole thing might be a disaster.

[mistriTsquirrel]

Update:

My mother and I took my father to the emergency room because he said he couldn't breathe, and he wanted to go to the hospital. This is his third hospital stay this month.

The sacks around his lungs have filled up with fluid again, but his coumadin levels are sky-high...so they cannot drain his pleural cavities at this time.

He is in intensive care now. We were told that he could die there...or he could stabilize and come home under hospice care.

No one knows if he will be alive a week from now, but his pleural sacks are more than halfway full of fluid.

He is still having trouble acknowledging the fact that he is terminally ill. He told the admitting staff today that he wanted to be resucitated if he stops breathing...even though he won't be able to "come back"...he is terminally ill, and no human being can stop him from dying.

His living will states that he doesn't want to be kept on life support if there is no hope of saving him...but he now says he still wants to be resuscitated and kept alive on a breathing machine if he codes. My mother and I both want him to "submit" to hospice, so that he can receive palliative care at home until he dies, if he makes it home...

Tonight I saw something in my mother's eyes that I have not seen since he has been sick...I saw sympathy and sorrow. (On the other hand, she did spend quite a bit of time talking about herself, and how his death will affect her...in the ER...which made me want to vomit.)

I guess I should have known what was happening when I saw how swollen his feet were (I called the doctor on call at his oncology practice, who said it may possibly be due to malnutrition). We were told (months ago) that he would eventually die of organ failure...and it looks like his organs might be failing...and if they can't drain the fluid around his lungs, he will suffocate.

When I go in tomorrow, I will ask him if he is willing to risk a major stroke to go off his coumadin so that they can drain his pleural cavities. He already has at least 20 areas of damage in his brain because of strokes, but I feel like he doesn't have much left to lose.

Regardless of what choices are made, I know that he will probably not be alive a month from now.

[pistolino]

I'm sorry, Mistri - if he comes home on hospice and then has an event and wants to go to the hospital for it, he will come off hospice.

Because he has brain damage, I actually wonder if he is able to understand his own plight and you may need to make decisions regarding his care without his input, as hard as that is to do. Cognitive issues sometimes aren't apparent until you're in a situation like this, where he has a living will made when he was mentally intact and now is stating he wants to be full code.

He may not truly understand his medical situation due to all the prior strokes. If you feel this is the case, you and your mother need to direct his care and it should be with the goal of keeping him as comfortable as possible until the end. That might also mean allowing nature to take its course, including not having his pleural sacs drained. When the body is actively dying, a person has no need for food or water and generally the only thing he could "suffer" from is pain, which can be treated to keep him comfortable.

[Deb1010again]

Mistri - I'm so sorry your dad is back at the hospital.

I lost a friend to lung cancer a few years ago and his last days were exactly as you are describing. I only tell you so you can be prepared -- although you already have been preparing yourself. He went to hospice and lasted one day. The thing your dad may not like about hospice is they don't treat the disease anymore. I remember my friend was not coming to terms with the finality of his illness either and he got very anxious when they moved him to hospice -- he had to give consent. But he still thought for some reason he'd be able to go to radiation/chemo and get hospital intervention if he felt badly. Anyway, he was very anxious but without any medical intervention (fluid was accumulating in his lungs and all body tissue) as I said, he passed in one day. I pray things go more smoothly for your dad.

At least he was able to come home one last time and have some time with the dog and your family. You are such a good daughter for all you have done to make him a priority in your life. I hope it gives you comfort in times like these.

Please keep us posted and know we care about you.