Second Christmas

[Hol]

I came here last night looking for something, anything to get me through the night. It is that tough time of year. It's cold and depressing. I stopped my grief counseling after 16 months and started feeling bad for her, I felt it must be a waste for her to hear the same story week after week.

I'm having a tough time with my loss to say the least. I don't know where to find comfort. It is not with my family, or my church , a book, or counseling and I hate bothering my friends. So, I just put that jolly face on.

It has changed my life completly, to a non life existance

My mom became my best friend in the last 4 years before she passed away. We had her in hospice care in the last two weeks at home. My mom went from walking and talking to bed ridden in a matter of a month. It all seems like a flash now, so quick and so much running around we did in the end. I hated the hospice care, when I needed help or advice, they weren't there. I knew nothing of changing an adult diaper the first week and we were not assigned help on Saturday and Sunday and we brought her home Friday.

More importantly, I was numb to what was happening. It was a nightmare for me. To see my mom become a (stranger in a way). to choke on any substance we gave her, to feeding her with a dropper and thinking you made progress after 10 droppers full equaling a teaspon in the end.

Now, it's the things undecipherd, what was she going through, could I have helped her more or held her hand more. What did she mean by that comment. This haunts me now and will always. Was she in pain ? it eats at me.

Now it's the holidays again, the family pretty much split up. Although it was tiny to begin with. My mom always kept it patched and now the glue is gone. but, it's just as well. My grandmother made me pay for copies of my mothers childhood pictures and my aunt told me to get a life the day after my mom passed. There was no support there anyway. On top of it, my aunt asked if I could take over for my mom in caring for my grandmother. A job she has denounced for herself, blaming her husband and saying " he would never stand for me taking care of my mother".

Now I realize how they used my mom and stirred trouble for her while she was alive. I declined my aunts request for a job she can most definitly handle. I have my dad to take care of anyway and I'm holding it all together with a thread.

I've looked into after life books for comfort, at least knowing my mom is in a better place rather than she had such a crap life here and now it's done and finished with no reward for her sacrifices.But, I concluded nothing. No one knows for sure and my faith is thin.

Thanks for listening..

Holly

[DebFromLodi]

Oh Holly, I am so sorry for what you are going through. This is my first Christmas without my mom and I need her so badly. I remember the Thursday I went to see her (she died 2 days later). I walked in the room and said hi, she looked at me and said "i love you, i love you, i love you" God I wish I could hear her say that again. My heart is so broke and now it is breaking for you too. We will get through this somehow. I want to take a tree to the cemetery. She loved Christmas. We will be having a family dinner just like when she was here.

I will be praying for you, Holly. Please be strong.

[AnnieO]

Holly,

I am so sorry. It sounds to me that you took care of your mom and did the very best that you could. Your mom knows that. I read somewhere that heaven or any afterlife we believe in , is the "reward" for your life here. I am sorry your family is not the support that you need right now. Don't let them pull you into their problems. You need to take care of yourself and you also said you are caring for you dad too.

We didn' t have hospice with my mom, we thought we had more time. She died in a rehab(physcial rehab) part of a hospital. They do not have many patients who die there, ususally peole are there for a hip or knee replacement and go home. But that day we were lucky to have a very young nurse that worked part-time in a nursing home, she told us exactly what was happening and what to expect next. When we knew my dad was dying we got hospice involved, thinking we didn't want to do this all alone. He was in a nursing home, but the extra care was very nice. The only thing that bothered me about hospice , was when we knew it was just a matter of hours, I called the hospice team and told them. They thanked me for calling and said to call back if I needed anything. I guess its unrealistic but I assumed someone would come and sit with us and help us. We didn't hear from anyone for 3 days. So, I am not sure how I feel about hospice.

Keep posting here, it really does help. Take care of yourself. You are not alone.

[Hol]

Hi Deb,

Thank you so much for your wishes. In the final days for my mom, I remember the day we brought her to the hospital. Everything was going so fast. She was getting radiation treatment for her headaches. The cancer progressed to her brain quickly and she was having tremendous pain. I kept telling her that I loved her, but she never said it back. I know they tell me that it was the cancer progression to her brain and she wasn't thinking right. I still wish she said it though.

Is Lodi like in NJ Lodi ??!!?

Holly

[Hol]

Hi Annie,

Thank you for your reply. My mom always requested to have hospice care. At one point during one of her many stays in emergency room. She got really scared and said she didn't want to be admitted and die in the hospital. We just looked at her and said "nothing is going to happen to you". Truly we didn't think anything was going wrong. She must have known though. I have to say, it was the worst thing and yet the best thing to do. We barely got help from hospice at home, if she was in inhouse hospice it would have been different. The girl that came in to wash her everyday was the greatest and most heart felt girl. She only had two weeks with my mom and when she passed, she came back to the house to say how sorry she was and she actually cried with us.

When we first took her home, it was a Friday. The nurse spent 2 hours with paper work and 10 minutes showing us the medications and off she went.

We got no help Saturday or Sunday. I didn't know how to change my moms diaper, gosh, I never even saw my mom naked. At one point I saw pink skin like pieced in my moms diaper. I freaked thinking she was losing skin from me not taking care of her properly. I called the nurse and told her I need help. She didn't want to come, I freaked out on the phone. She threatened me. She finally showed up and looked at my mom. I was using a new powder and it had a slight pink tint that wasn't really noticeable before applying it. I was stressed that's for sure, we got no sleep, watching and asking if she was comfortable. Then the bad breathing started, one night I ran to the neighbors house to sleep because I couldn't bare her to die that way, drowning in her fluids. They say it's not drowning, but I don't know about that. Wish someone could explain it.

I'm sorry for your loss and everyones loss here. We loved them dearly

Thank you again

Holly

[leeann]

Holly I am so sorry you were having such a tough time last night and of late. We all know... trust... me how much this hurts. And how rough it is at the holidays. It's my 2nd Christmas without my Mom too. It's different than last year. A different kind of pain that kinda snuck up on me a bit and seeped into my bones.... and stayed there.

What is different from last year for me is this year is I have learned that I'm gonna cry sometimes while I'm writing out cards, putting up decorations.... shopping... etc. Last year.. I could barely DO ANY of that at all. This year.. I learned to do them while I was IN pain... anyway.

Things are not the same. I took short cuts everywhere.. wrote less on the cards... didn't decorate as much AT ALL as usual.. but got some things up...and I shopped with much confusion... forgetfulness and tears in parking lots... but.. I did it.. anyway... in pain.

It's like I learned that this kind of pain doesn't always mean I have to stop. I can work through or while I'm feeling it. Last year was like paralysis. It was TOO raw and new a wound to even think about the holidays let alone do something about them. This year I got a scab on the inner wound and I'm tougher in there. And.. I'm not as hesitant to shed tears this year. I don't care anymore... hence the crying in the parking lots. My mind was totally distracted by the grief while I was trying to shop. So.. I forgot stuff alot.. and yeah.. stuff that I had even written on lists that were in my hand.

Even in the food store.. I'm staring at the list in my hand one day last week and it was as if the list was written in a different language! I literally couldn't read it. So I wandered up and down the aisles hoping I would see something that I remembered that I needed.

And yeah... you know it.. I forgot stuff too and had to go back the next day.

So this year is definitely different. I'm moving.. but I'm limping.. you know?

On hospice.. I think they, meaning the Hospice workers, count on us to kinda be quite clear with what our needs & the patient's needs are.

I remember being in the inpatient hospice with my FIL. He was there only a few hours and was just about settled in... and I saw the frown come across his brow. I asked him if he was in pain and he just nodded. So I went down the hall.. found the nurses station and just told them he was having pain. Immediately they got up and attended to it.

In the in home hospice my cousin had.. they called their Hospice worker (who was there several times a week and.. in between..) within hours of his passing and his daughter literally asked them to help them go through the final hours with them all. And sure enough they came and let them know exactly what to expect, answered all of their questions and let them know they would come again if needed or they could stay if they still wanted them to. But.. since they all had their questions and fears answered.. they were ok and the Hospice worker left. So I guess it depends on the Hospice. And maybe how well we communicate what our needs are as caregivers and what the patient's needs are to the hospice workers. But I really think communication is key.

Like Holly if you had said point blank.. "I haven't ever seen Mom without clothes let alone change her diaper".. they probably would have gone over that with you or taken more time with that. And I know it's past the time.. but I imagine if you had a question.. yeah even now.. about the the fluids and drowning etc.. and there is something you do not understand about what happend.. I'm sure you could call up that Hospice now and ask them to explain it to you. Or even her Doctor... you could speak to them too and ask your questions. Maybe that would help you to speak to them.

And Annie when they said "Call back if you need anything." Maybe letting them know.. clearly... that you thought you might need them there with you would have let them know what you all really needed. Like you could come and be with us now.. that's kinda what we need.

Also maybe the Hospices themselves could be much clearer with us exactly what they do and what they don't do. That would help us tremendously so we could have realistic expectations.

So that 'good communication' is a two way street. The Hospice should be able to let us know what their typical functions and duties are and where they stop and we, as caregivers, pick up.. ya know?

Annie, Deb and Holly... (((((Hugs)))) for you all. I wish you Christmas Peace.. at least. It's hard to be Merry.. I can't be. But I will be the best I can and that will be good enough.

I'll try to remember the best of the holidays I was blessed to spend with my parents. Enjoy those who I am with now as much as I can. And I hope the same for you all.

leeann

[Hol]

Hi Leean

Thank you for replying.

This year is different than last year. Last year I was numb, this year it's more clear on how things will be without her. There will never be surprises left at my door step for her. I had to shop for my own gift from my dad the other day for my birthday (the wretched day is today by the way). I can't say anything to hurt his feelings, so, I made like it didn't bother me. But, to be honest, there was no joy in it like something special from my mom.

It's just not the same.

The hospice we had was outright awful. I didn't even want to say the word even. But, I also don't think it is right of them to leave you hang on the weekends. If my mom was in in-house, I know it would have been different. But, that is not what she wanted, she just wanted to get home to die there. She even had such a pleading face of tears asking to go home. My heart was broken.

After the first week, we called another hospice to request a transfer. The other hospice put us through to the director and he was so compassionate. He said not to disrupt my mom by moving her into different beds. He called our hospice and had a talk. Before you knew it, there was a complete change. They asked if we needed extra hours and for once my dad and I were able to go to lunch and get away for an hour.

The day we brought my mom home from the hospital. My dad had to wait at the house for the bed. He was furious, the bed didn't arrive at 9am like he was promised. It didn't arrive at 10,11,12. The rotten hospital said my mom had to be out by 1pm (literally kicking a dying woman out). I was forced to argue with the social worker that they couldn't just leave my mom in the driveway at the house. My dad was upset, because that was time wasted away from my mom. The bed arrived at 2pm without an apology. The nurse did not arrive until 7pm that night. My mom had no medication that day at all. We couldn't give the hospice dropper medication (we weren't instructed on how to do it). We couldn't give her, her pills, she couldn't swallow them. We asked the nurse that is a neighbor to help and she did. Can you imagine being in pain in your final days for 12 hours without medication ?!?!?!?!?

I guess because the nurse arrived late, she was concerned about her paper work getting done and wanted to get home. Good for her

It was an awful hospice experience for us. No matter how many questions or how clear we where....just bad !!!

Have a nice holiday

I'm just going to get through it !!!

Holly

[leeann]

Hol

No question what happened with your Mom was unconscionable. There is no excuse for that kind of treatment. It sounds like there was a breakdown of communication perhaps between the Social Worker and the hospics people and the folks delivering the bed. Why the hospital didn't give her any pain meds before she left is beyond me. If there were no oreders from the Doc for it.. they should have called the Doc to order more if things were going later than expected. No.. clearly people dropped the ball with your Mom's care. And I would write some letters to both the hospital and the Hospice.

Yes your experience WAS awful.. without question. And you and your Dad are not to blame. Your communication was fine there. It was the hospital and the Hospice who didn't coordinate her care properly. And the Hospice person should have been there before 7pm or the hospital should have shown you before you left how to administer the meds. No... this was completely UNcalled for, unprofessional and downright the opposite of palliative care by my personal definition anyway.

I know Hospices are staffed by volunteers as well as professionals. HOWever I think their nurses are paid staff. And.. insurance carriers pay them. You could also report your experience with that particular hospice to your insurance carrier. There is NO way what happened to your Mom should have happended. And I'm heart sorry it did.

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

leeann

[DebFromLodi]

Holly: I, too, had to change my mom's diaper and i had never ever seen her naked. That was a hard thing to do but after awhile, it did not bother me at all. My mom was totally fine the days before she died. Then when they called us to the hospital on feb 2 at 6:30 a.m. she was non responsive. The nurse told us she had fluid building around her heart and her breathing was like under water, she too drowned in her fluids. At the very end, she lifted her head up toward the ceiling (or perhaps to God) and her breathing changed. The nurse said two or three more breaths and she would be gone, and she was. I hated her having to die like that. I pray she did not feel any pain or discomfort.

Our stories are so close. I am praying for you.

[MartyT]

Dear Holly,

I am terribly saddened and sorry to learn of your awful experiences with the hospice care you and your mother received, and I can only imagine how devastated, let down and angry you must feel about it.

Sadly I must tell you that upon occasion I hear from people whose experiences with hospice are less than satisfactory, but fortunately such reports are rare. We are all human, hospices are run by human beings, we all make mistakes, and balls do get dropped sometimes. I recognize, however, that for you it makes no difference -- obviously your experience was one of the worst, you and your mother certainly deserved better than that, and as Leeann said, you have every right to be angry about it.

I don't know whether you've contacted the hospice that served your mother to ask for a meeting with the team to review your case. I recognize that at the time, you were upset about all of this and probably not feeling at your best, perhaps even fearful that if this meeting were held right then you may have lost control of your anger -- but I must tell you that at some point I think it is essential for you to have such a meeting, so you can be heard, get your questions answered and have your concerns addressed. I know that when something is not right about the care a patient receives, both the administrative staff and the clinical staff here at Hospice of the Valley stand ready and willing to meet with the family to discuss and resolve whatever issues may exist. That's the only way we can fix things that may go wrong: first we need to be made aware of the problem, then we need to investigate what went wrong and do what we can to fix it, so that at the very least it won't happen again to another family.

Keep in mind that the timing of such a meeting is completely up to you -- you don't have to request it unless and until you feel ready to take on this important task. Once you feel certain of what you have to say, then you can write or call your hospice and ask for such a meeting. Consider taking a trusted friend or family member with you -- one who's willing to "state your case" if you become too flustered to say what you came there to say. Please don't make the mistake of just letting it go. This is something that isn't likely to go away -- and it could have the effect of keeping you "stuck" in your own grieving process, unable to move ahead in your grief journey.

Instead you might think of having this meeting as something you can do for your mother as well as for yourself -- and for other families who will use this hospice's services in the future as well. You need to be able to look yourself in the mirror and tell yourself that, although this death did not go as you wanted or expected it to and there's nothing you can do now to change the outcome, at least you spoke your mind about it to the people who let you down, and you did all you could to make sure it will not happen to someone else's loved one.

To help you better understand how hospice care is supposed to be, I can refer you to a number of resources on the Internet that deal with standards for hospice care, and I can assure you that the Joint Commission on Accreditation of Healthcare Organizations has a set of standards for hospices in this country.

Here are some other resources I'd suggest you visit as you conduct your research:

Hospice Net - Death, Dying, Caregiving, Grief

Hospice Homepage Resources Terminal Illness

Hospice Foundation of America

Last Acts Coalition

I also want to share with you a piece that appears on a colleague's Web site, Growth through Loss and Love, by John Chuchman, at http://www.torchlake.com/poetman/main.html, because I think it states so well what hospice should be about:

People ask me, "What is Hospice?"

I almost cannot answer, certainly not glibly or very succinctly.

Hospice honors dying, not so much death, as dying.

It is where the dying come to rest, to be cared for, to be honored.

It is where the dying come to find peace, to prepare for the new beginning.

It is where the dying come to die in community, the community of friends, family, ancestors, descendants, and the community of nature and of spirit.

Hospice is where the dying come to leave their great gifts for others and to be thanked for all their gifts of wisdom.

Hospice is where the dying come to tell stories, share memories and gain perspective.

It is where the dying come to receive and grant forgiveness

and sum up a lifetime with friends, family, community.

Hospice is where the dying come to connect with the Life Source and to contact ancestors and spirit guides to help with the transition.

Hospice is a place of active dying, not leaving it in the hands of others or drugs or machines.

Hospice can be Oneness, Joy, Ecstasy.

Hospice can be Peace and Letting Go.

Life began in a Garden called Eden--

Let mine end in that garden called Hospice.

Love,

John Chuchman

Again I want to say how sorry I am that this has happened to you and your dear mother, and I can only hope that what we've said is helpful to you in some small way.

[Hol]

Hi Marty,

Thank you for your response. The hospice recommended to us was from the hospital my mom was comfortable with. We knew of only that one recommended. After my mom passed, we spoke to the people we needed to and it was all reported. When I went for grief counseling I did not do it through them. I was able to go to a different hospice counselor that I loved.

I will never recommend them to anyone though. Not to say all hospice is bad. I don't think we were prepared enough for what happened or what we had to do.

The nurses aid was great, fantastic even. She was so gentle with my mom. More so than the RN's. She even came by the second weekend on her own time to help a bit. She even cried the day my mom passed. She made up for the bad experience.

Thank you again for being helpful

Holly