Hospice not just for last few days posted by MJC @ 08:07 PM November 17, 2008

MJC — Mon, 17 Nov 2008 20:07:36 -0000

Rebecca, YOU GO GIRL!!! I think you hit the nail on the head. That is exactly how I felt. Rayofsun, I did the same thing. I did not know that mother only had a few weeks left to live. I'm glad I could give her a sip of water at 2 am and I'm glad I could fluff her pillow and tell her I loved her at 3 am. I am still empty, I still ache and my back still hurts, but I'm glad I did what I did and I do not rue the things I could not do. I've sent all the Thank You notes and paid the funeral home. I am trying to find my life again, not my old life, but a new one knowing that I accomplished the mission I had in front of me. Please try to keep going, use hospice as much as possible and keep the faith.

Hospice not just for last few days posted by rayofsun @ 03:35 PM November 17, 2008

rayofsun — Mon, 17 Nov 2008 15:35:56 -0000

Rebecca,that's it! That's exactly what it feels like. There are times I won't even get up to go to the bathroom in the middle of the night because our floors creak and I know I will here "Tammie, is that you"!

What you wrote is so true. Thank you.

Hospice not just for last few days posted by Rebecca @ 03:06 PM November 17, 2008

Rebecca — Mon, 17 Nov 2008 15:06:24 -0000

what is strength? i imagine that it feels like what I see

... strong muscles, ease of motion, sensation of soaring, complete control....

but really it’s the same sort of thing as courage -

...i think of fearlessness, power, insight, unbeatable conviction, but really, its none of those things...

its taking one step towards what i believe in, even if i’m crying while i’m doing it

I can’t go on, I said to myself. I can’t do another thing. I give up.
mom called from the bed, i rose, adjusted her pillow, and collapsed again
I can’t go on, not one more thing,
mom called from the bed, I rose, gave her a sip of warm water

i have no strength left, i’m empty, i ache, my back is in spasm
mom called from the bed, i rose, caressed her forehead, helped her move her leg
i’ll never make it through the days or weeks ahead i think, then its the morning
but i did discover something, I can just do this one thing that i’m doing at this moment

Hospice not just for last few days posted by jaded_heart @ 06:23 AM November 17, 2008

jaded_heart — Mon, 17 Nov 2008 06:23:31 -0000

RayOfSun - Don't beat yourself up. With these sorts of issues there are lots of grey areas. Learning to manage the practical aspects will free up your time and energy for living the rest of your life. As far as easing your work load the incontinence issue is huge ... but J-pads (for males) worn in conventional underwear may be enough for now especially if your father will accept the use of a hand held urinal he can use where ever the urge hits him (you can place a foldable decorative screen near his favorite chair to have on hand if more privacy is desired). Plus, we used disposable chucks under a draw sheet on Dad's bed, three layers worked best for us so we could strip off a soiled layer to expose a fresh layer during the night. My father had a massive cerebral hemorrhage with literally no chance of full rehabilitation, but we didn't require Hospice services for almost six years. We did have to adapt our entire lifestyle to accomodate Dad's limitations (blind, brain injured, left side weakness, short term memory loss - the list goes on and on). It felt insurmountable at first, but we gradually found more resources and learned the skills we needed. Eventually Hospice was appropriate, but for us it took a long time to get there. The crying part is normal and healthy ... life as you've always known it is over and now a new normal will take time to settle in. I used to cry in the car, the laundry room, and in the bathroom which were the only three places I was alone on a regular basis. Sounds crazy but it was my way of trying to spare my family more pain. They will all tell you how strong I was and how rarely I broke down ... but what they don't know is I broke down multiple times a day each and every time I got a few moments to myself. Seems like that was the norm for about a year so I don't know how the rest of the family could have missed it except that they were so consumed by their own pain they really weren't focused on me. Because of my experience as a nurse I felt very isolated from the rest of the family for quite a while because within hours I pretty much understood the severity of what had happened and I think it took the rest of my family several months before the full impact set in. At first I felt very cruel even explaining the neurological consequences to them ... it felt as if I were bursting their fragile bubbles of hope but at that time any decisions needed to be based on facts rather than unfounded dreams. Every family meets these trials and tribulations in their own ways. There are no right ways or wrong ways. We all do whatever we need to do to get by and you'll find your way too.

Hospice not just for last few days posted by rayofsun @ 08:23 PM November 16, 2008

rayofsun — Sun, 16 Nov 2008 20:23:46 -0000

Oh rebecca......crying doesn't make me feel very strong though. I hate it. My husband walks in the bathroom this morning and says, hey, how are ya this morning and what do I do..........CRY! I pull myself together and then my dad talks about how he needs to walk more. He would be doing great if he would walk more. You can't get out of the chair and walk around the house at all. Ok, I get it dad. I don't do enough for you, you want me to take you places to walk so that we can try and learn how to run to the restroom when you can't hold it because you refuse to wear protection. Then I have to listen to you about how humiliated you are because you wet yourself. Come home, drag you into the shower.........................

Anyway, was feeling better. Went out by myself to do some shopping. Actually I felt great.

THEN....came home and hubby is trying to put up the christmas lights, crying again!!!!!!!!!!!!!

So now im cutting coupons, won't be starting supper for another few hours. I can't have any caffiene or choc. because I am having a nuclear stress test on Tuesday and believe me, as soon as I leave there....im going across the store to Rite Aide and getting the largest Hershey's Bar I can find!!

Hugs to you all,

Hospice not just for last few days posted by Rebecca @ 04:00 PM November 16, 2008

Rebecca — Sun, 16 Nov 2008 16:00:30 -0000

rayofsun - you make me laugh! btw, you don't have to stop crying, and you already are strong. I cry while I do things all the time.

Hospice not just for last few days posted by rayofsun @ 03:36 PM November 16, 2008

rayofsun — Sun, 16 Nov 2008 15:36:21 -0000

Right now we are just stuck on traditional help in the house OR hospice. Like today, dad actually walked out to the car WITHOUT his walker! So, does that mean no hospice, he wants to continue trying and just doesn't know how to verbally tell me! But last night I had to help him get into bed! You see dad never, ever had to make any decisions, he is NOT a decision maker. I think what I have decided to do is move on with these scheduled appts, make appt's with both traditional homecare agencies and hospice agencies. Have them come to the house so WE ALL have a better understanding. At this point, I can't even think about my sister. Im the one dealing with this every day. She spends 2 to 5 minutes on the phone with him almost daily unless she is on a trip.

I have to take control of this...im losing it. I have to stop crying, get strong and just do this. Man, im so much better with words than I am in real person!!!!! I wish they could just jump off this page and do everything I just typed!!!

Im of today, leaving dad behind with hubby. I have to get scripts for dad refilled. I also have to get my hubby a birthday gift for Tuesday. IF I come back home.............you'll hear from me later!! Just kidding.....I will be back!!!!

Hospice not just for last few days posted by Missy @ 10:27 AM November 16, 2008

Missy — Sun, 16 Nov 2008 10:27:00 -0000

MJC, I'm so sorry for your sudden loss. *hugs* I remember when my father-in-law passed away, hospice continued to keep in touch with us for several weeks after to make sure we were okay, offering their grief services. Remember those are there for you.

Ray, I adore you for cranking up the Wii! LOL Boxing is the best! How has your weekend gone? How is your dad? I'll be thinking about you!

Hospice not just for last few days posted by jaded_heart @ 06:43 AM November 16, 2008

jaded_heart — Sun, 16 Nov 2008 06:43:21 -0000

RayOfSun- There's a lot of guilt with families of Hospice patients even under the best of circumstances ... and almost nobody has the ideal family support network for end of life issues. It's the nature of the beast, denial is one of the stages of grief and we all hit those stages at our own pace, so typically there is one or two family members that aren't on the same page as everybody else for a while. For us as a family it was my brother who stayed in denial so long (a couple of years actually). In turn I focused the anger I had (another stage in the greiving process) at my brother who was happily embracing his denial. It was sort of an emotional mess for a long time. We had nearly seven years to work through it, death lingered on our doorstep a long, long time ... in many ways that was the most agonizing part of it but now I see how badly we needed the time to come to terms with it individually and finally as a family. Seems God didn't ever give us what we wanted during those years but we damned sure ended up with what we needed to work through it. Funny how that so often happens right under our noses and we can't see it at all until we're past it. I quit a job and was the one in the trenches doing a lot of the caregiving, and yes I do remember a couple of years where I felt my brother was pretty useless. It was a long, hard road for everybody but I can't tell you how much Hospice helped us towards the end. The pieces of your family's puzzle are all there, just have faith that your love for one another will help you find a way to put it together.

Hospice not just for last few days posted by Rebecca @ 06:34 PM November 15, 2008

Rebecca — Sat, 15 Nov 2008 18:34:25 -0000

Hey Rayofsun, Darnit, but there is no manual about how to do life right. We just have ta take our best shot at it. At some point our little engine just runs out. You can't second guess your dad, and yourself. Go for the hospice. Get out of the house. Take the job back. If you need $$ that are available then have your dad sign for it. And yes you need to bring your sister into the conversation.

With a little life for yourself - out of the house, working, it will refresh you and provide a little breather so that you can really be with your dad when you are with him.

And if your dad is really ready to go, and you give him permission, he may leave sooner then you think. If so, then this weekend is a special time for you alone together before the hospice and other people come in and help him and you with his transition.

ps - We had the frozen pesto with our pasta for dinner We're with you!

Hospice not just for last few days posted by rayofsun @ 11:38 PM November 14, 2008

rayofsun — Fri, 14 Nov 2008 23:38:25 -0000

LauraL, thank you so much. It's just so hard being the ONLY child even though there are 2 of us! Im so afraid of making a mistake. Im only POA for medical so if I need any money and dad can't sign for it, then I have to ask my sister for it! How unmanageable is that!!! It's just Friday, im tired. I usually look forward to Sat and Sun because my hubby is home with me but he will be gone all day tomorrow so it's just us, again, all day tomorrow , ALONE, AGAIN!!! It's supposed to rain so getting him in and out of anywhere would be a big PITA!!!

Well, it's leftovers night. Im frying up some spaghetti for me!!!!

Hospice not just for last few days posted by LauraL @ 10:46 PM November 14, 2008

LauraL — Fri, 14 Nov 2008 22:46:00 -0000

Aw, Ray! You know, the hospice IS for you, and nothing says you have to take on a burden all by yourself, not at all. You get that help that you both are entitled to, and do find someone to help while you work. Your life is not on hold because your father is ill, honey. You still have responsibilities to yourself, too. I know it's so hard and what I'm saying sounds so easy, but do get some help!

Hospice not just for last few days posted by rayofsun @ 10:42 PM November 14, 2008

rayofsun — Fri, 14 Nov 2008 22:42:06 -0000

It's me, RayofSun. Im so,ugh...............................I could just scream. The dr. ok'd Hospice. I have been talking to my dad about it, and also the other option of still fighting, going for the tests, possible more surgery,etc.. He says he wants to do Hospice, but it's like he is saying it for me. I don't know what to do. My sister is in Savannah GA having a fling, can't manage to even call dad and it's REALLY making me mad!!!!!!!!!!!!!!!!!!!! (especially after the day I had with him) I think we ALL need to talk about this, not just me and him. I think Hospice is the way to go. That's just my opinion. It seems to be my sisters too. My dad talks about wanting to just die, he wishes he could just take a pill and die, so on and so forth. I feel like I have been punched in the gut and I just can't breathe. They have my dad's med's all messed up because of problems he was having, so im watching his BP, which went through the roof today so I had to call and see what to do. So, we put him back on an old med, now his heart rate is fairly high. I had to take him to the hosp. for tests today, which was a nitemare!

You know what I want to do tonight, I want to go out and have a HUGE steak, bakes potato and salad. Of course, if I told my sister that...she would say...what's stoppin you.

I need help and I have to have it before christmas or im gonna just lose it. I felt so good thinking things were going to start coming together.

The job I quit to take care of my dad actually called me today to ask if I could help out over the holiday. I would LOVE too, just to get the heck out of this house. But I have nobody to stay here with dad. I told dad, hiring someone is going to cost money, so I guess I should start looking at those costs and just figure out what im lookin at in reality.

I think im going to go turn my Wii on and box!!!

Hospice not just for last few days posted by Rebecca @ 10:23 PM November 14, 2008

Rebecca — Fri, 14 Nov 2008 22:23:03 -0000

Oh wow MJC! Wonderful to get help but then suddenly to lose your Mother so soon after. big hugs to you. I'm so glad you found help.... I am just so impressed with the hospice people I've met - the compassion and understanding - anyway thoughts are with you!

Hospice not just for last few days posted by MJC @ 07:18 PM November 14, 2008

MJC — Fri, 14 Nov 2008 19:18:09 -0000

I have been taking care of my Mother for the last 10 years. This past year, after mother fell and broke her hip, I looked for months to try and find someone who could help me here at home. In searching the interest, I found "A Place for Mom", I put in my name and phone number and within an hour I heard back from them. The next day someone came out from a local hospice and did an evaluation and suddenly I had all the help I needed to care for mother at home. Hospice also made sure I was ok and I needed that also. This was October 3, 2008. Mother passed away October 28, 2008. I cannot tell all of you how much hospice meant to me.

Hospice not just for last few days posted by LauraL @ 09:48 PM November 13, 2008

LauraL — Thu, 13 Nov 2008 21:48:06 -0000

Jaded heart, I just wanted to give you hugs. ((hugs)) I think our emotions rule the moment a lot during big events.

Hospice not just for last few days posted by jaded_heart @ 05:16 AM November 13, 2008

jaded_heart — Thu, 13 Nov 2008 05:16:48 -0000

Ray- You are wise to seek assistance and to understand your own needs in relation to the death of a parent. I wasn't at all on top of things as my father was dying and my befuddlement was way out of character. My emotions ruled the moment. I'm just fortunate that there were competent and caring professionals on site to help us through.

Hospice not just for last few days posted by rayofsun @ 05:19 PM November 11, 2008

rayofsun — Tue, 11 Nov 2008 17:19:10 -0000

I was just approached yesterday regarding getting hospice for my father. I wished that i would have had it for my mother but didn't have a clue about anything then so she passed in a rehab, but I was with her.

I want dad to go peacefully, and as this article stated, I want to be his daughter...not his nurse when that time comes.

Im still awaiting some approvals to find out if dad will qualify for hospice. Im crossing my fingers.

Thank you so much

Hospice not just for last few days posted by jaded_heart @ 05:41 AM September 28, 2008

jaded_heart — Sun, 28 Sep 2008 05:41:46 -0000

Hospice guidelines vary from state to state, sometimes from agency to agency ... unfortunately I've been on both sides (20 + year nurse with aging parents). Generally a hospice "certification" is thought to be six months or less, but many people outlive their cert. Typically a new evaluation is done and the cert. is renewed. Hospice just means end of life care focused on quality of life issues in cases where no effective treatments are available or all other avenues of treatment have been exhausted. Some facilities offer in patient options, but the trend in healthcare for the last decade has been in home assistance (including people with nursing home / assisted living arrangements). It's true that once Hospice has taken the case all medications and supplies are generally provided ... mostly due to Medicare part B funding and to a lesser degree depending on your state to more inclusive "bundled services" permitted within state medicare programs. Just as important, there are skilled nurses and medical assistants on call around the clock, so those scarey 2:00 a.m. episodes almost everybody goes through with a dying loved one don't have to be weathered alone. Further, Hospice nurses generally have a direct 24 hour line to a medical director (a doctor) and access to a 24 hour pharmacy for just such emergencies. On top of that, the family has the benefit of having somebody that's done this dozens, if not hundreds, of times before so that when it comes down to the end there is the peace of mind of knowing that everything that should have been done was done properly and in a timely fashion. It doesn't sound like much, probably because Hospice can't give us what we really want which is to make it all better ... but once you've been down that road all the way to the end you'll find it's a huge comfort. I discovered, much to my amazement, that once my father was actively dying my mind shut down and I couldn't function effectively even though I'd done this with other families so many times I can't put a number to it. In the end I was my father's daughter and didn't want to be his nurse ... I'm very grateful to the nurse that was able to step in when I needed her most.

Hospice not just for last few days posted by Bodhi @ 02:51 PM August 31, 2008

Bodhi — Sun, 31 Aug 2008 14:51:13 -0000

Also what's interesting to me, is that the hospice people said that if my friend's dad had to terminate the hospice, he could come back on it again at a later point. The other cool thing was that the social worker said that the insurance might get messed up for the first month or so, but just to let her know and she'd help to work it out. Sure enough they got these ridiculous bills the next month and freaked out. Well as it turned out that one was a hugh co-pay from a previous hospitialzion - the famous 'gap' in the medicare system and another was just a mistake from the doctor's office.

And of course somehow its easy for me to be objective about it because it's not my dad, but when my mom was dying, such a different story . Well I think hospice people are amazing too!

Hospice not just for last few days posted by Anonymous @ 05:38 PM August 28, 2008

Anonymous — Thu, 28 Aug 2008 17:38:09 -0000

Hello Bodhi,

I work as a caregiver with a hospice agency now and have been with them for about five years and you are right they do have alot of services. In my hospice agency we offer all that you said plus we also have the chaplains and the social workers who offer a tremendous amount of support. Normally we do not start patients on hospice until they are diagnosed as having 6 months or less to live. We have at times had to release patients from our services from time to time but thats not a bad thing!!! It was great in the sense that the patient became better or was not going to pass away but wanted to stay around. Even still if we did have to release them we still stayed in contact with the family and helped out with emotional support because they get bonded to us as we do them, so we still check on them but we are definitely happy when they continue on with life. One thing I have been told many times was that we were a very important part in their life and they seem to really enjoy us but one thing I always tell the families is that even though we come in, we are not near as important as the families themselves. The families are the ones who are there around the clock and have astounding bravery to go through what they have to go through. Our famlies are fantastic in their own caregiving and I love to tell them that they are even more important than we are. For all of you who are caring for a loved one, you all are AMAZING people with tremendous courage and your support is even far better than ours. As much as I love to hear people say how wonderful we are I just want you all to know that "YOU" are the ones who need to be told how amazing and supportive you are as well. Please know that we could not do our jobs as well as we do without your help either! God Bless you All!

Hospice not just for last few days posted by Missy @ 08:35 PM July 11, 2008

Missy — Fri, 11 Jul 2008 20:35:07 -0000

Oh Sheila! I'm so sorry you and your husband are having to deal with his lung cancer. I'm thankful for you, though, that hospice is iinvolved. They bring comfort in so many ways!

Hospice not just for last few days posted by sheila a @ 06:15 PM July 11, 2008

sheila a — Fri, 11 Jul 2008 18:15:07 -0000

Hospice is super and the people are wonderful

My husband signed up about 2-3 wk ago and has gotten so much help from them it is unbelievable. It was hard to get him thinking it was ok and not for the end of life only.

he has lung cancer and had several chemos and the last doctor visit said it had kept spreading and now we are just taking a day at a time

Hospice not just for last few days posted by LauraL @ 02:32 AM July 08, 2008

LauraL — Tue, 08 Jul 2008 02:32:26 -0000

Bodhi, thank you so much for posting this! You are right, not everyone knows all that hospice has to offer, and you'v e done some fine educating here this week. Good on you for helping the members of this site!

Hospice not just for last few days posted by Missy @ 12:57 PM July 07, 2008

Missy — Mon, 07 Jul 2008 12:57:46 -0000

Hi Bodhi,

It's great to see you posting again! And you've shared some really important information. When we used hospiced to help with my father-in-law in his final days of lung cancer, we were also very thankfully surprised at the range of services they offered not just my father-in-law but our family. They opened themselves to help us cope with the grief beyond his actual passing. Hospice is an amazing organization and I'll never be able to say enough good things about them.

Thank you for posting this!

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