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New to Care Givers

Posted by sweeby (My Page) on
Mon, May 21, 07 at 11:46

I'm a regular GWebber and see many familiar names, but just wanted to post a quick intro over here, as I imagine I'll be spending some time here over the next year or so.

My mother will soon be moving to a full-range senior living community in our city from the state where she has lived all of her adult life. She was the only family member left in that area and her health was failing. Her three children all live far away and far apart, and we are the only ones in this area. (Myself, husband, and two sons, 16 and college-bound, and 11 year old with autism.)

Mom's a lifelong heavy smoker, diabetic, and was recently diagnosed with lung cancer. Her diagnosis is so recent that most of the relevant medical facts aren't in yet. The facts that stuck in her mind are that her cancer was caught 'relatively early', but that it's not likely to be curable, that at least one tumor is located near some nerves that are likely to make her cancer significantly more painful than my father's (He died two years ago, also from lung cancer, but was active until the last 6 weeks.), and that this type of cancer often metastasizes to the brain. The probable pain and possible future brain involvement have her worried, as her intellect, good humor and wit have always been some of her strongest points, and she is loathe to become a burden.

Fortunately, Mom has sufficient insurance, income and assets to pay for her care, which gives her the best options available. Additionally, she is very rational and organized and has already done many things to sort out her business affairs and make things easier for us. She already has a living will with medical directives, is clear on the types of treatments she does and does not want, and has indicated she will give me full power of attorney to use as I deem fit. And thankfully, none of her children are greedy, irresponsible, addicted or trouble-makers, so I don't foresee any serious disagreements about medical care or estate matters. (Knock on wood.)

So that's the bad news and the good as we start off on this final journey. Any words of advice from those of you who know would be appreciated.


Follow-Up Postings:

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RE: New to Care Givers

Get that Power of Attorney. Then take it to her bank and ask them will they accept it. Some banks want their own POA, signed at the bank by your mother, listing the banking information, etc. I found this out the hard way. Lucky for everyone, the banking officials at that particular bank knew me and the situation so there was no big problem.


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RE: New to Care Givers

Hi,
Welcome to the world (job) of caregiving. The hardest and yet rewarding(when it is all over and you look back) job you will probably ever have.
Do the Bank power of attorney-Ours would not accept it either.
Sounds as if you may have it much easier than some-your Mom has made lots of good plans.
Good Luck and remember to come here for venting when you need to.
Connie (past caregiver)


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RE: New to Care Givers

sorry to hear the news - my Dh was diagnosed w/cancer 6 wks ago and it is a real pain dealing w/M D Anderson.

CM


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RE: New to Care Givers

Thanks for the words of wisdom and encouragement. I'll be sure to get a separate POA from the bank for financial transactions -- good advice.

CM - I was wondering whether MD Anderson would be the way to go, or if it would make more sense to try to get treatment at our community hospital. (Memorial Hermann Memorial City) MDA of course, is legendary. But Mom has decided she wants only palliative care followed by hospice, not revolutionary attempts at a cure, and MDA is a heck of a drive with logistical obstacles at every turn. MHMC supposedly has "the latest" in radiation therapy and is a nice hospital close to home. From a 'quality of life' standpoint, getting treatment nearby would be much better; but is it worth a sacrifice in 'quality of care'? And how big a sacrifice (if any) would it be?


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RE: New to Care Givers

Let your mother's wishes be the guilding factor as long as she is still able to function. Sure, treatment near to home might not be a great as some of the latest treatments elsewhere, but it's easier and if she wants it, that's all that matters.

There is not going to be a "cure." She might not even realize but a few weeks of additional time. Maybe not even that, because no one can tell you exactly how much time she has.

We had a daughter-in-law that really fought her cancer, her mother and sisters urged her to try everything the doctors suggested. The results were that her estimated two year survival was only a little over one year from diagnosis. What happened? The radical treatment destroyed the cancer, but it also destroyed part of her brain and she died, quicker and without normal brain function.


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RE: New to Care Givers

here's our time frame so far.
endoscopy (camera) by GI 4/13, - tumor,biopsy taken
CAT-scan 4/16
biopsy is malignant 4/17
MDA called on 4/22
first appt 4/30 (oncologist)
5/7 - meet radiologist
5/9 - PET-scan
5/23 - meet anesthesiologist
5/24 - endoscopy w/ultrasound
5/30 - meet oncologist again to get treatment plan

we are never seen on time. The first person (nurse, resident) gets info, says wait for Dr. - who 30 minutes later comes in and asks same questions then says 'we'll be touch with appt for next step'

Hubby needed new pain meds (can't have anything aspirin related for 5 days prior to 5/24) - called oncologist and was told 'Oh we can't prescribe anything because you are not under our care - have only seen you once"

I'd like to know who in H**L is treating him then? Finally called regular MD who then gave us a prescription for Darvoset (which DH can't swallow as he can't even swallow a baby aspirin at this point)...so last night we used a meat mallet to crush the pill, then pushed the pieces thru a fine mesh strainer so he could put it on a spoon, added some Ensure on top of that in order to get the meds in his system.

We live near Katy - it is 52 miles RT and I am NOT a happy camper! In addition I work full time near Sugarland (and it is MY insurance that is paying for all this) so I need to keep my job. In addition (in a moment of sheer insanity) we have made an offer on a retirement place and I have been dealing with all that too.

If your Mom only wants pallative care, I would suggest finding a really good oncologist with a wonderful 'manner' and just going with MC-MH.

CM


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RE: New to Care Givers

Thanks Agnes and CM for your perspectives --- I talked with Mom yesterday, and her first response was that of course, the local hospital would be most appropriate, then wavered when she found out how 'good' MDA is supposed to be. I mean, it's ranked either #1 or 2 in the entire country, and they do have a satellite center for radiation that's not in the medical center.

I guess the tricky part is defining what 'really good care' means to you. Is it being availabile when you have an appointment? Getting an appointment quickly when you need one? Being a person to your Dr., not just a case? Not having the doc go postal or mentally flip the 'care switch' when she continues to smoke (she will)? Finding an oncologist who will work with your GP and handle insurance issues? (Mom's been on a zero-paperwork HMO for the last 50 years - Can you imagine?)

I guess I'm wavering, too! CM told me one story of dealing with MDA -- Guess I'll look for folks who went with MHMC to see how their experiences were. Any other ideas for comparing quality of care?


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RE: New to Care Givers

Sweeby I am so sorry to see you over here.

All I can add is take it one day at a time and do your best to make your mom the focus. I found in the few months between the diagnosis and when my mother passed away that some of the medical people we went to had ideas that were not in line with what my mothers wishes were.

One thing that really helped me was having my mom sign a release at every doctor, lab or any medical facility we went to. As soon as we walked in the door I ask for the release she could sign so I could call and talk to the doctors.Tell them to put a note in the front of her chart that they can talk to you. I saved a lot of time if I had to call them later. Almost every office we went to had a different form and non would just take my medical power of attorney. At a few I had to write my own and have my mother sign it in front of them.

And do call her insurance company, medicare or anyone you may have to deal with on the phone and ask them to sent your mother the form to sign that will allow you to talk in her behalf.

Make copy's of her insurance cards and keep a list of any medications she is taking. Keep an ongoing list of names, addresses, phone numbers and note what tests or procedures she had with each doctor or lab.

I kept a ongoing word doc that I updated as needed of everything I thought I might need. Then printed out a new copy to put in my purse when we had any appointment so I could fill out all the paper work without asking my mother a thousand question at a time when I knew she was scared and upset.

When making appointments always ask if they will need Xray or test results. It was so frustration to get to an appointment only to be told they didn't get the Xray or for them to sent you to get one and have to come back another day to actually see the doctor. I got to the point that I would ask if I could have the Xray or test results myself so I knew we would have them when we needed them. I had to be a little pushy at times but for the most part I could get my way and it saved a lot of time when my mother was tired and getting upset and saying to just forget it I want to go home.

And if you have family or friend that get to vocal about how you are handling things just very nicely tell them it's about your mothers wishes not about what they think or want. Remind them that this about your mother not them and that is where your focus is.

Again I am so sorry you and your mother have to go down this road. I know how hard it will be for you and will keep you and your family in my thoughts and prayers and remembe to find some time to take care of yourself.

Claudia


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RE: New to Care Givers

Thanks Claudia - There's lots of good advice in your post and I can tell it's hard earned. As the mother of an autistic child, I've also had to learn to be 'assertive' with medical and educational professionals, and to keep a comprehensive and well-organized set of my own records.

Your comment that "some of the medical people we went to had ideas that were not in line with what my mothers wishes were." really hit home with me, and I'm sure we will be facing much of the same. I suspect my mom's always had an "If you're not having any fun, why bother trying to live longer?" attitude, which isn't really in line with the conventional "as long as possible" viewpoint. Fortunately, her attitude is well-known to my brother and sister, so I'm confident they'll trust that whatever decisions I make in line with that viewpoint would be what Mom would want.


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RE: New to Care Givers

Sweeby,
I'm in north TX with a mother entering Assisted Living next week having been in rehab with a cracked pelvis since late March. She thinks she will be going home after a while, but that is very doubtful as she will probably only be out of a wheelchair and on a walker with assistance.

Since you are in Texas, you should also consider getting her to sign a guardianship "in advance of need" form now. Check it out on the internet. We were not advised by our attorney that this form existed, but it does. You will probably never need to use it, but in case you do, this makes the guardianship process much less contentious and less expensive -- fewer hours with the lawyer.

I have all POAs, etc, but if my mother (who also has multi infarct dementia) decides to take a cab and go home, I have no recourse except guardianship.

Good luck, Carol


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RE: New to Care Givers

Quality of file was always my main goal for my mother. Her death certificate says she died of lung cancer! Her oncologist confirmed to me that the cervical cancer she had about 14 years previously, 40 plus years of HRT, had spread to just outside her stomach and then to her lung. And yes the oncologist said that many years of estrogen probably did have a lot to do with the cervical cancer.

My mother was a heave smoker so the hospice people just put down lung cancer. My father and sister went along with it and at that point I was just to tired to argue anymore. They forced mom to quit smoking 4 months before she died and my attitude was that it was just cruel. At that point what difference did it make. I just wanted her to be as comfortable as possible and if smoking helped so be it. Even her doctor said he didn't have a problem with her smoking.

They went on and on about how they should have made her quit. I tried endlessly to explain it was never their responsibility to make her do anything and finally just gave up. Looking back I am fairly sure my mother knew she was sick the 2 years before diagnosis but she chose not to do anything about it. She told me that after the first cancer if it ever came back she wouldn't do anything about it.

Mom was 81 and in the end she died in her own bed in her own house just like she wanted. Thankfully she didn't have any pain, non at all. But the whole experience could have been much easier for her, and me, if I wouldn't have had to fight family on so many issues. They just couldn't get it around theirs heads that she didn't really want to eat or drink anything and again tried to force the issue.

I finally had to have a total screaming fit with my family because my mother was just crying about how they wouldn't leave her alone. I kept having to tell them that it was not about them and what they wanted it was all about mom and what would make it easier for her. It was not a day I ever want to repeat.

Our first hospice nurse actually told my father that she didn't see anything wrong with my mother and if she would just get up and walk to get her strength back she would be fine! My question was what part of stage 3 cancer didn't she understand. Needless to say she never came back. In some ways hospice made it harder. The next nurse came in everyday and told my mother she was dying. I ask her to stop because mom was so confused she would forget she was sick. Again I thought it was cruel. Finally the third nurse was a keeper. She was wonderful with my mother and really helped my father cope with everything.

Sorry about the rant but just today my father again said if only he had made her quit!! It will be 3 years on the 27th and it's been a hard week for me. I still miss her so much.

Claudia


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RE: New to Care Givers

Oh wow -- I can so relate. My sister especially has always been on my mom to quit smoking. I think that now, with the cancer, my brother may also jump on that bandwagon. But again, Mom's mind is totally, 100% clear (well OK, 99%) and she wants to keep on smoking. So to my way of thinking, it's her decision and she's entitled to make it. And as a parent who's never 'hounded' any of her adult children about any of our choices, IMO, she deserves the same from us.

I'm so sorry to hear that about your initial experience with hospice nurses. When my father passed away, his hospice nurse was an incredible help. She gave medical information to him in exactly the manner he needed and wanted to hear it -- straight-forward. She didn't 'burden' him with sympathy, and he felt able to speak to her honestly and openly about his emotions and level of pain. (If you knew my father, you'd know what a miracle that was.) And after my father passed away, she kept in regular contact with my mother and became a good friend. In fact, I'm sure she's helping Mom through her initial emotional reactions as we speak...

Thanks for the 'guardianship' information, Carol. Would that only apply if she begins to lose her mental abilities? Or are there other circumstances where that would be needed also? I couldn't imagine using guardianship to overrule my mother's wishes if she were still largely mentally intact, though I could see her refusing certain minor treatments.


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RE: New to Care Givers

"I couldn't imagine using guardianship to overrule my mother's wishes if she were still largely mentally intact, though I could see her refusing certain minor treatments."

Well, if she's unable to respond because of her medical condition---that's why you'd need the guardianship in advance. It may not be her mind at all, but she may be unable to respond.

I should think that you will do best to talk to an elder care attorney ASAP, and see if there are other factors to consider. Are you on all financial accounts? Do you have a trust set up? If your mother has more than $10,000 in assets, set up a trust. I closed up my mother's estate very easily with a trust. No probate and very very low legal fees. If you do not have a trust, her will must go thru probate and that's what gets expensive.

I wish you the best. You are getting great advice, and I hope it all helps. And take care of yourself. Which is easier said than done, but one of the most important things!

Helene


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RE: New to Care Givers

Sweeby,
You are right -- my guardianship info is really in case your mother's mental health takes a turn for the worst.

If my mother was "with it" mentally, I would not consider the guardianship.

The distinction is that, at least in Texas, your mother has free will even with your POAs. The guardianship would take away her rights to make medical and other decisions.

Carol


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RE: New to Care Givers

Sweeby, the company I work for is a multi-national company and we almost annually have someone from abroad come to Houston specifically to be treated at MDA.

One of the gals at the main office checked out MDA and found it met our Corporate folks idea of top-notch. The same gal had a BIL that went to both MH-MC and MDA and she gave MDA much higher marks that MH-MC.

But her BIl was in his late 30, had 4 children and hoped to have a long life ahead of him (unfortunately, it spread to his brain and he died within a year or two).

What MDA does very well is co-ordinate everything....you are assigned a 'co-ordinator. If you have not visited the MDA website, I strongly urge you to do so.

They are opening a new radiation center out near Katy but not until December - much too late for us. I am hoping RM starts radiation the first week of June. His tumor is NOT in a good place (very near aorta).

One suggestion I would make with your mother is let MDA believe she is from out of state - I suspect the folks out of state get their appointments as close together as possible where we local folks who 'commute' get strung out over time.

I really find it difficult to believe that it took almost 2 wks to get the PET-scan and another 2 wks to get the EUS on the schedule. I was told they get 1000 new patients every week.

If you want to talk on the phone to the gal I mentioned above, or you want to talk to me I will be happy to e-mail the phone numbers.

CM


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RE: New to Care Givers

Thanks CM! I was thinking about taking the 'out of state' route also...

Do you know what BIL found better about MDA? Was is medical care or patient-handling? Again, I have no doubt of their 'medical superiority' -- but the last thing my mom would want is experimental protocols and last-ditch efforts. She's looking for a comfortable place for palliative and hospice care -- a 'good death' more than a 'longer life', if that makes sense.

I have been to the web sites for both, and have talked to both on the phone. And really - they both seem like good options, so that's certainly better than not-so-good options...

Thanks Helene and Carol for the additional guardianship info. Sounds like something we should get prepared and signed, then stick it away somewhere with a promise not to use it unless it comes to that... My mother has already mentioned some variation of all of the other documents, but this is one she hasn't brought up. Hope she won't take offense --


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RE: New to Care Givers

whatever facility you choose, make sure you specify 'pallative care'.....and I would also suggest checking out Hospice organizations quite early.

My Mom has had hospice care for 2 years (she has advanced MS and will be 90 in another week).

CM


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