My dad is dying...and its awful (long and rantish) - Mothering Forums
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#1 of 10 Old 08-17-2009, 01:48 AM - Thread Starter
 
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My dad is dying- terminal COPD. Its crazy and I still don't understand how this happened- I talked to him on the phone one day and the next his condition had worsened and the next day he was full-blown dying. My dad lives in CA and I'm in VA. I decided to fly out and say goodbye and support my sister (who flew in from MI) and his sister (my aunt) who lives near him. I had to leave my 3-year old home with my husband and bring my 3-month old. The cost was financially debilitating- crass to mention/think of? The trip was wearing. My anxiety was high over the s-storm that would await my return such as unpaid bills, full-time mothering and housekeeping, and buku deadlines for all my open cases. Ugh, I talked to my dad on the phone maybe 9 days ago now and he was OK, then just a couple days later he was bedridden and really unable to see/communicate effectively.

The hospice facility he is in is awful. Four persons to a room, very little individual care, I've never seen another visitor in there. I guess its where poor people go to die- which makes me want to go off on another tangent about inequality. The place stinks. I worry about having the baby there- germs. My dad is agitated and fights the attendants and tries to get out of bed or sit up, he mutters "Oh God" and "No no no", he can't breathe. They sometimes say he is too agitated to receive the meds that keep him from being in pain, they sometimes say he was sleeping peacefully so they didn't want to bother him with the meds- I think this sucks. He hasn't eaten any solids in maybe 6 days and only a few sips of liquid each day. His eyes look cloudy- I think its the morphine. He signed a DNR before this deterioration and asked for no extraordinary measures, but it seems so awful. He is skeletal. I stayed one week (just got home again) and when they had neglected to medicate him with morphine that last day his eyes looked clearer and he recognized me, saw the baby, I told him not to be scared and he said "I'm not". I kept getting up to go and kiss him on the forehead and say bye and he would wake up and smile at me and say "Hi baby" and I felt like he wanted me to stay but I had to go, I can't sit for hours in that place with the baby. F-. What a process. It just seems so wrong. No hospice person is by his bedside now- they only do that if the person might harm themself I guess, so now that he mostly rests (screams, groans, tries to ask for help with no one to hear him) they just leave him and I guess check on him during rounds a couple times a day.

His apartment was smoky and dingy- we scrounged a box of mementos and old pictures and left the rest. We gave his car away (it was a POS). There was a whole stack of unopened letters from the bank (you guessed it- bounced check notices- ugh). I'm looking into cremation I guess we will be paying for that process too. Its complicated. My parents divorced when I was young and my dad was an abusive alcoholic- but he loved us, he just had a lot of anger and hate in general.

How can I say all this/any of this to anyone? I mean "Laugh and the world laughs with you, Weep and you weep alone" does seem to hold true. Nothing more boring than a friend who wants to talk about something as uncomfortable as death right?

I am just so mad that other people get a better experience as far as better care, better facilities, more lucidity- I don't know it is just sucking.

Book lovin librarian nerd mama to Caleb 6/06 and Aiden 4/09: and 1 angel 11/07. "No one cries alone in my presence."
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#2 of 10 Old 08-17-2009, 02:41 AM
 
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#3 of 10 Old 08-17-2009, 03:22 AM
 
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NAK.
I'm so sorry and I understand a little...my Dad died a few weeks ago in similar circumstances and you just get through it the best you can. So if you want to vent or talk feel free to pm me.

As for the care he's getting, my dh has much experience with hospice care esp. as far as who to go to in a facility and what say to get things done. If you want I'll get him to read/type here when he gets home tomorrow.
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#4 of 10 Old 08-17-2009, 09:51 AM
 
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I'm sorry.
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#5 of 10 Old 08-17-2009, 11:34 AM - Thread Starter
 
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Originally Posted by stormborn View Post
NAK.
I'm so sorry and I understand a little...my Dad died a few weeks ago in similar circumstances and you just get through it the best you can. So if you want to vent or talk feel free to pm me.

As for the care he's getting, my dh has much experience with hospice care esp. as far as who to go to in a facility and what say to get things done. If you want I'll get him to read/type here when he gets home tomorrow.
Thanks- any ideas would be appreciated. I am OUTRAGED that the quality of one's deathcare is dictated by how much money they have.

Book lovin librarian nerd mama to Caleb 6/06 and Aiden 4/09: and 1 angel 11/07. "No one cries alone in my presence."
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#6 of 10 Old 08-17-2009, 09:10 PM
 
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I'm so sorry. Everyone has the right, no matter what their financial state, to die with dignity. Do you know if there are any hospice vounteers in the area? I know here there's hospice volunteers who go spend a few hours a day/week with someone.

I would defenitely speak with someone about them not wanting to wake your dad up to give him his medication. End stage COPD should not go unmedicated.

A million 's to you and your family.
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#7 of 10 Old 08-17-2009, 10:10 PM
 
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I just posted in your other thread as well, but my mothers death was caused by COPD also. She had it for a while and was ok, and then suddenly she was a lot worse but stable, and then suddenly she was comatose in a hospital.

She recieved much better care than your dad did but her level of care was definitely impacted by her lack of financial resources and health insurance. It is a very bitter and painful thought that her finances are probably the primary reason we lost her so soon.

I am so sorry that you didn't feel like your father was at least being taken as well care of as possible. Your experience sounds absolutely heart wrenching and awful.
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#8 of 10 Old 08-18-2009, 02:18 AM
 
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Originally Posted by heatherweh View Post
Thanks- any ideas would be appreciated. I am OUTRAGED that the quality of one's deathcare is dictated by how much money they have.
Ya:that is just wrong on every level.

Dh isn't home yet so this is secondhand + I'm keeping up with 4 kiddos so I hope I don't mangle what dh said...I read him your OP.. but as for the skipping his med doses the prescribing doc should definately be notified so s/he can fix it. Do you know if he's under the care of his own GP or a staff doc? He said some other issues would be taken up with the Director of Nursing (as diplomatically as possible) but if meds are being withheld the doc is the go-to.
Dh was appalled, honestly And he's worked at some pretty crappy facilities. Not saying that to make you feel worse; just to let you know that's NOT the norm.
I feel so awful for you having to do this long distance. Is there any local family or friends who could come sit with him? Most places really don't have the staff to keep company but if he's calling for help he should be getting it, obviously. Does he belong to a place of worship? Most churches have volunteers to visit in situations like this, even if he didn't attend anywhere.

Again , I'm so sorry. I wish I were close enough to help.
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#9 of 10 Old 08-18-2009, 03:29 AM
 
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heatherweh, I am so sorry for what you and your family are experiencing.

I lost my father to OCPD last October, right on my mom's birthday. He had been at home and for the last 6 months had been grieving heavily for my brother, his first child, who passed away before him on Earth Day, 6 months prior to my Dad's death, of lung cancer. He had really suffered with his OCPD in those last 6 months, the grief was just too much, and he wanted little help. He was bitter, I think, and perhaps his pride got in the way too. He passed away without warning, and I never got a chance to say good-bye. You are blessed to have had those moments with your Dad. I still grieve for that loss.

It has been harrowing, and I just keep doing my best to be present and move forward, as I have my little ones to think about. I feel like I am healing very slowly, and I accept that. All in due time, I think.

I would encourage you to try to support your Dad with meeting his needs in the (seemingly by your description) crummy place he has to spend his last time. He should have access to at least one caring person as he prepares to leave. It's only right. No one should ever cry out to be helped and have no one come. That is heart wrenching to imagine. You can find the strength, allow your little ones some time with a movie or whatever, to assist you with phonecalls. It can come together. Your Dad needs you to help. I will pray that his needs are met, and that he is not alone, if he doesn't wish to be during his last piece of life. My heart goes out to you, and try to stay strong, for your little ones too.

ERIN, : simple living mama, on the path to simplicity with DH, Scott, Matthew, 8 Brendan, 5 : and a garden full of
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#10 of 10 Old 08-22-2009, 03:04 AM
 
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I don't normally post on this board.. but I just visited 'home' and am feeling the loss of my momma acutely now My momma was in hospice care as well, but they came to her home... I wish your dad, and everyone else, could experience the wonderful care she did. I agree with a pp, call an administrator or the doctor directly, palliative pain meds should NOT be skipped ...they are to keep your father from being in so much pain and they can't do the job if they aren't given as the doctor ordered.

It's natural to be aware of the consequences of how much $ it cost you, but don't feel bad about spending the money to see him . I didnt HAVE the money to spend to see my momma before she died and I will forever live with that pain. Trust me, the financial pain will be over far quicker.

Be gentle with yourself mama.

Pagan  lovin'  WOW playing mum to 5 boys in the wonderful land of Oz ... FOR THE HORDE! hehehe
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