janehill Posted May 14, 2007 Share Posted May 14, 2007 Worked my tail off the last 5 days preparing for Mom to move in today - and she's finally here and in bed. All good. But when I spoke with the hospice coordinator at the hospital, she said I can't engage hospice unless someone is home with Mom 24 hours/day. So is that the case with everyone else here? Do you all not work or rotate between siblings, neighbors, friends to be there with a parent in hospice while you are at work? And does that mean that if there is a person who has no children or spouse and opts for hospice, that that person cannot do it? How awful. I said, Well never mind then. I only need someone to come in to offer pain management help and maybe send a nurse for weekly blood tests (since Mom's on Coumadin) and so I guess I can't have that because I can't quit my job and stay home all day long. I'll tell ya, I DID try very hard to keep an open mind and embrace this help and then, again, I am reminded how pathetic our infrastructure is for the old and ailing. Makes no sense. Of course, I got the lovely offer to call them for support in case I need to talk. C'mon! What I need is for someone to come out and help with pain management and oxygen if/when it's needed and not give me garbage about having someone here at all times before they can come. Naturally, when Mom is no longer able to stand on her own (and get to the bathroom), I will either take a leave of absence or hire a live-in but until then it's rough to know they can't offer me help. So...what experiences have you guys had? Is this just a ridiculous NJ thing? Quote Link to comment Share on other sites More sharing options...
Welthy Posted May 14, 2007 Share Posted May 14, 2007 Jane -- wow, I didn't know about that! Just when you think you've got things under control... Sending you many, many hugs and hoping others will be able to cue you in on the whole hospice deal. Welthy Quote Link to comment Share on other sites More sharing options...
wendyr Posted May 14, 2007 Share Posted May 14, 2007 Jane, so sorry for this temporary set back. My mother was on hospice here in Florida & she lived alone. It was never an issue. Her nurse came out a couple of times a week. A social worker showed up once a week and a home health aid came 3 times a week to help with bathing & personal stuff etc. In addition they have 'friendly volunteers' who came around to either just visit or run to the store for her. That was when she first went on Hospice & was able to do most things for herself. Towards the end I moved her in with me & all the visits from the whole team just transferred to our house, with increased visits from the nurse for pain control. We lived about 10 miles away from Mom's. I just cannot say enough good things about them. Hope you can get this sorted out. Is there more than one hospice in your community that you can talk to? Good Luck & God Bless wendyr Quote Link to comment Share on other sites More sharing options...
Ry Posted May 15, 2007 Share Posted May 15, 2007 Jane- No that is not the case- that is bulls*it. Call another hospice- this time try to find one that is a non-profit and not affiliated with any particular hospital. Hospitals are notorious for referring patients to their hospice only and not giving them all the options to choose from (not legal in Michigan). I would pull out the phone book and start calling some others-- good luck. I hope you find a good alternative. Let us know how you make out. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted May 15, 2007 Share Posted May 15, 2007 That is such a load of crap. I agree with Ry, call around and see if you can get another hospice to help with what your mom's needs are NOW. This makes me sick, really sick to my stomach. Quote Link to comment Share on other sites More sharing options...
wondermom Posted May 15, 2007 Share Posted May 15, 2007 I am sorry to hear this. Good luck getting things straightened out. Quote Link to comment Share on other sites More sharing options...
fillise Posted May 15, 2007 Share Posted May 15, 2007 Jane, I found this list of Hospice providers for New Jersey. Perhaps you can find one in your area who will admit your mom. http://www.state.nj.us/health/ccr/resou ... /rb99d.htm Susan Quote Link to comment Share on other sites More sharing options...
missyk Posted May 15, 2007 Share Posted May 15, 2007 Oh Geez!! We have to option (and I've always assumed that everyone else did, too) of choosing which hospice service to use. We have no only three different hospital services, but the county, too! Whichever one Mom's been with (and she's been with two now) they've been HUGELY helpful in getting everything we could possibly need to care for her at home. There is no stipulation that someone must always be there (though we're to that point now because of falling issues)...we have either a nurse, a social worker, or an aide that come out each day and sometimes there's more than one a day if the schedules overlap!! And they're never more than a phone call away if we have a question about anything. I'm sending prayers that you find a service that will work well for you all...the last thing you guys need is the added stress of dealing with this kinda crap! Good luck and let us know how it works out and if there's anything we can do to help! Quote Link to comment Share on other sites More sharing options...
laban Posted May 15, 2007 Share Posted May 15, 2007 So sorry to hear about all this trouble. Sounds like you got alot of help from the wonderful friends on this site. Good luck in finding the Hospice that WILL come to your aid. Quote Link to comment Share on other sites More sharing options...
kamataca Posted May 15, 2007 Share Posted May 15, 2007 I'm new to the hospice thing, too. We Do have someone with Mom 24/7, but that is our choice and we are working out our own schedules. I do not remember ever being told that it was required. As many have suggested, I would check out other hospice programs. We did not choose to go with the hospital's hospice, only b/c Mom was very upfront about which company she wanted in advance. We did call a couple of companies to compare services, however, so we felt more informed. You are going through enough right now w/o all this hassle. I pray you can find a more cooperative hospice! Kelly Quote Link to comment Share on other sites More sharing options...
janehill Posted May 15, 2007 Author Share Posted May 15, 2007 Thank you guys so much. You know, I hadn't even considered that there are other hospices to use. I thought when the hospital called in a hospice that they were giving me the one affiliated with my area. But thank you all for the suggestions and the link above. I'm going to get rolling on that so I can get her some more help. Right now I don't feel desperate. She has a TON of pain meds and cough meds and every possible medication she could need. Aside from that, I can get her her breakfast before I leave (just tea and a croissant is all she's get down) and leave something in the fridge for lunch and then I can make her something in the evening if she wants it, which she doesn't (she's barely able to manage 400 calories a day the last few days). So I think I've got things covered very nicely for now but I do need to line up hospice for when it's tougher. Can I tell you all though, I feel physically exhausted but about 90% better having her in my house. The stress and fear about something going wrong and me having to drive 1.5 hours to reach her and then to deal with it was HUGE and I'm just feeling so grateful it's over. In fact, I would suggest to anyone in my shoes to bring their parent home with them. Whatever difficulties there are in having your parent under your roof are mitigated by the benefits of the most important thing in the world: Peace of Mind! Quote Link to comment Share on other sites More sharing options...
Ry Posted May 15, 2007 Share Posted May 15, 2007 Jane- Hospice will appreciate getting a call from you before you actually need them so they can have all the paperwork ready. It will makes things much easier when you are ready for them. Quote Link to comment Share on other sites More sharing options...
janehill Posted May 16, 2007 Author Share Posted May 16, 2007 The hospice nurse is coming tonight at 6 PM - so I'll be heading home around 4:30 to make it back in time. They're going to put her into a "transition" program so I can get a nurse out to perform blood tests and other needs and then into hospice when it's needed. At that point I will hire someone full time until she's very close to the end and then take a leave of absence (I am just being extremely careful not to take it too soon or I'll run out of time and then will have a difficult time being there when I really really really need to be). I'm monitoring how much she eats - which is a fraction of what she used to but she is eating some things so I think she's still relatively okay. Well, on with this journey! Quote Link to comment Share on other sites More sharing options...
Nova Posted May 16, 2007 Share Posted May 16, 2007 I also thought there was only ONE Hospice... Didn't realize they were all different... I'm from Florida, and used to work as a CNA/Home Health Aide. I worked for a not-for-profit agency, caring for patients in their homes. Most of our clients got the service for free, and a lot of them also had Hospice service's being provided. Maybe you could check into your local Senior/Disabled help programs, and see if there are any agencies in your area like the one I worked for. They'll send in a CNA/HHA for free (most times), while you're gone, to do anything that your Mom needs. (getting her lunch, bed baths (if needed), running to the store, picking up meds at the pharmacy, changing her bedding, etc.) Hope things work out for you. The agency I worked for was called "C.A.R.E.S.", and it was financed by, and part of, the United Way. Maybe there's one in your area??? (All CNA's have massive background checks, etc., so it's about as safe as can be now-a-days). Good luck to you. Nova Quote Link to comment Share on other sites More sharing options...
wendyr Posted May 16, 2007 Share Posted May 16, 2007 So glad you got the hospice thing straightened out. Isn't it wonderful how the people here can give input & take a problem that could be insurmountable to one & put it all in perspective with information & practical help as well. What a godsend. wendyr Quote Link to comment Share on other sites More sharing options...
fillise Posted May 16, 2007 Share Posted May 16, 2007 Jane, I hope this works out for you. It sounds like you have a workable plan now. I know what you mean about time off. I'm very consious of not taking any because I might need a lot later on. On a side note--my mom got a letter from Hospice this week. It was a fundraising letter, but my dad brought in from the mailbox, all pale--he thought they were already trying to sign her up! She had to explain that it didn't quite work like that. Susan Quote Link to comment Share on other sites More sharing options...
janehill Posted May 17, 2007 Author Share Posted May 17, 2007 Such AWESOME news!!! My experience with hospice nurse last night: EXCELLENT! He signed my mom up for hospice, despite my having to work full-time, and for home health care for 20 hours/week, which will be a big and wonderful help. On his way to see us, he ordered an oxygen tank and they came out LAST NIGHT so she's even breathing better. Today she gets a visit from another nurse and the home health care will start in a couple of days. Plus they can do her weekly PT/INR blood tests (because she's on Coumadin for the blood clots) and he ordered the really heavy pain meds (sub lingual Roxynol - sp?) and other things in ADVANCE of her needing them so we can have all of that stuff on hand. I wanted to kiss him! I just felt like I got so much cooperation and a real interest in helping my mom and I in ways we NEED and not in what I call "fluff" program stuff that are cute and swell but don't address the critical needs. So I wanted to tell you all and thank you for your encouragement and advise. Things are good and I feel so much comfort knowing my mom may be able to stay in my home through the end and I can be there with her grand"kids" (the dog and two cats!). Quote Link to comment Share on other sites More sharing options...
Calintay Posted May 17, 2007 Share Posted May 17, 2007 I am so happy reading this post I could kiss him. Hospice truly is an amazing organization and I believe that people who work with hospice truly are angels. Best of luck to you guys and please keep us posted. Heidi Quote Link to comment Share on other sites More sharing options...
trish2418 Posted May 17, 2007 Share Posted May 17, 2007 That's great news, Jane. Sending lots of prayers for you and your mom. Trish Quote Link to comment Share on other sites More sharing options...
wendyr Posted May 17, 2007 Share Posted May 17, 2007 Great news, Jane. So glad you got it sorted out. Good Luck & God Bless wendyr Quote Link to comment Share on other sites More sharing options...
tiredmom959 Posted May 17, 2007 Share Posted May 17, 2007 I'm really happy for you and your mom (and the "kids")!!!! Quote Link to comment Share on other sites More sharing options...
fillise Posted May 17, 2007 Share Posted May 17, 2007 Jane, I can feel your relief in reading your words. I'm so glad that you have a partner in hospice now. I'm smiling for you today! Susan Quote Link to comment Share on other sites More sharing options...
beat it Posted May 17, 2007 Share Posted May 17, 2007 Your post are like a 180 spin!!!! I am just so happy for you that you are in a good place and can concentrate on your mom with out excess stress. I pray this continues for you and you continue to post and keep us updated!! Beat it!! Quote Link to comment Share on other sites More sharing options...
Nova Posted May 18, 2007 Share Posted May 18, 2007 I'm so happy to hear that it worked out for you! And you get Home Health care too!?? That's great! If you get a decent CNA, she should really lighten your work load quite a bit. (And if you "don't" get a good one, don't be afraid to call in and request a different one!) It's their job to do everything they can for your Mom, thus taking a tiny bit of pressure off of you after you've worked at your job all day! I'm happy it worked out. Nova Quote Link to comment Share on other sites More sharing options...
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