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I mean I am not minizing it.
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Awe book- you did everything you could and knew to do so please don't be hard on yourself. I wish I knew more too when my dad passed away and I wish we had brought in hospice ... Hind sight is always 20/20 and hopefully the nurses who come check on your dad will help with getting hospice for him when the time comes.
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Book, i agree with Sharyn. You did all you could. I went to a hospice presentation a couple of months ago. Had just done that with J. And my experience helped others to understand the importance of a number of things. Probably at the top of the list is why people need to have POA's in place. While your memories of trying to get hospice in place for your Mom are depressing. Think about how the information that you have about your experience would help other caregivers. Until we come to that place, there is so much that cannot be understood. I would encourage you to go and share it may be good therapy for you as well.
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No. I'm fighting depression. The suicidal thoughts are tying to enter but so far I've been able to block it out. I only started mourning mom's death, by crying, last December - and mom had died in March of 2013. I thought I could handle the subject of hospice. Obviously, my crying bout - like a running faucet that won't shut off - tonight is telling me that I'm still raw. On top of that, no matter what you all say, I'm still struggling that mom died on my watch - within 1 year - of my becoming the head of this household since dad is now bedridden. I have too many things on my plate. Too many. And struggling with that lone thought 'death sounds so good now.' I want nothing to do with hospice.
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Book I would encourage you to go to the hospice meeting-your experiences can really help others and also Hospice needs to know where they went wrong in your case-your experiences may help them to do a better job with others.
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Austin, there's nothing that hospice can do. Due to Medicare's strict requirements - there is no ifs, ands or buts. They could not do anything without the doctor's say so. Even the insurance said that their doctors do NOT do house calls. That we have to go to the clinic. In the end.. when you really really think about it. It was our fault that mom died without hospice. In reality, we should have just chosen to take mom on the ambulance, it's just a minor painful inconvenience for mom to take that ambulance ride to the clinic to be transferred back and forth from the gurney to the exam table - to see her doctor. We chose - between the options at that time - that mom should die without any unnecessary pain as much as possible. We, the 8 children, chose this option - no ambulance ride. So in the end, it's not hospice fault. It was our decision. I'm tired. Night...
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Book I'd be angry too. But not with myself, if I were you. With the dunderheads who set up the hospice system in a way that guaranteed impossible decisions. I think of those people on the phone, complacently telling you that we can't come without the doctor's instructions, oo no the doctor doesn't do house calls she'll have to be brought here - and I just wonder how they can have so little imagination about what they were asking you to accomplish. It makes me spit.

Don't you dare blame yourself. Don't you dare.
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The dr should know the patients sotuation so imp the dr failed due to either not looking at the patients file to remember the situation or some technicality they chose to follow.
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Musicmade- my m has had vertigo at least 3 episodes that is being looked into as well.
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Book If you go to the meeting you can at least get information for when and if you need it and can give them information on how to treat others who need their services in the future-they are in the business of providing services for families in need-they should be aware how they failed you in the past so they can do better and maybe your doctor was at fault-he should have taken the time to assist you and informed you how to proceed to get hospice for your mother at the time
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Book if this is a general careplanning meeting I would encourage you to go so they don't make stupid decisions like bringing in PT to get dad out of bed and moving or giving you stupid diets to follow. If the Dr has seen dad within 6 months he can sign off for hospice. You know perfectly well that dad will not consent to going to the Dr or have hospice in. If you really can't face it don't go. From what you describe dad does not sound medically ready for hospice so they would not admit him end of subject. There is absolutely no reason a patient can't be kept pain free without hospice. Trouble is Drs are scared to prescribe narcotics. Every time I go to the PCG I get the third degree about narcotics not that I have or need them.
Have you thought about still having PTSD from the years of caregiving for Mom? That is not to mention the grief that you have never been aable or allowed to experience so if you are able to cry and grieve now let the tears flow they are very clensing. Grieving is very different from guilt so let that run down your face with the tears. You have done your best and most of all you had the love in you to do what you knew how to do. There is always room for everyone to learn more but you used and gave all you had. Because you have learnt more with dad and and wish you have known then what you know now does not mean you should feel guilt,you did your best that is always enough. As far a mom dying on your watch have you thought it happened because she felt safe in your hands to be able to pass with you at her side. She did not abuse you because she wanted to. She just did not know another way to raise her children. It was what she learned from her own parents.

To anyone else placed in the situation of having to transport a patient to a Drs office insist that they are seen immediately and not transferred off the stretcher to the exam table. have them seen right there and immediately transferred back to the ambulance home that way they only face two transferrs and no weight. You may have to jump up and down and yell and scream even chain the patient to the gurney but make it happen. These days with minimally trained healthcare aides assisting in medical offices now more than ever you have to advocate for the patient.
Another tip for Dr visits is to type out the patients medications, trade and generic names doseage and when taken and why they are taken. This is very helpful when visiting multiple Drs in different medical systems.
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Veronica, it is not a care meeting, at least that is my understanding. It is a once a month caregiver support group, where occasionally they have speakers. This time on hospice.
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Book,

You have done and continue to do an excellent job!
I am in awe of your dedication and how you face the challenges of caregiving.

About seven months ago, I can't really even remember why my sister took mother
to the ER, I think it was for her back pain. They ended up admitting her to the hospital. When the doctor's at that hospital came in to start checking her, discovered that she's 93, they started to ask my sister why it was she (my sis)
hadn't looked into Hospice for her. Now again......I'm at a loss, because my sister doesn't share to the full extent about mom's medical situations. But nevertheless,
my sister also informed the hospital doctor, that it was becoming increasingly difficult to get mom in, to see her doctor.....because mom was now frail, doesn't want to get in the car, etc. So the hospital doctor drew up the order, had the social worker come in, and they got Hospice going. In our state, it provided visiting nurses to come every week and take mom's vital's. At some point they even sent
someone to assist giving mother showers. They even left my sister with a kit, with morphine in it, oh now my memory is kicking in it was for ongoing back pain gone wild. My sister administered the morphine on one occassion when mom was in excruciating pain.

I remember the Hospice head nurse came and explained to us about the program.
Aside from the obvious assistance it provides, the nurse also told us, that in many cases doctors will give an o.k. for it, as they realize how difficult it's become given age, conditions, and even the stress on the caregiver, to get a patient in to see a doctor. Hence this is managed at home. He, (male nurse) also informed us,
that if mother got better, then Hospice would be suspended. Well, that's what happened.

But, for the reasons you have stated, I completely understand where you are at,
concerning the loss of mama. It is fresh. But please.......don't blame yourself.
We are all going to leave this realm one day, that is already a given.
You've done and continue to do the very best you can, and none of the unfair bureaucracy should make you feel as if you've done anything incorrectly.
All the opposite. I always, hold out an extra space for families very personal decision also, as to what added stressful things a family decides to put a loved one through. In this case, as you and your family decided the ride would just be too much for her. That was a noble decision, and be at peace with that.



Hugs,
You're in my thoughts!
Much Love & Light! Margeaux
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Anyone ever think of going on some type of drugs( prescription) to handle the one your caring for? I mean as is with my kids mental health issues, and my sis who eventually will be back but also has issues, along with the loved one your caring for?

I just cant do this alone anymore. Aunt- his daughter refuses to stay in his home for two days if he has no cable!!!! Even my ADHD/ODD/VIOLENT son lives without the cable there! My aunt is also only coming about once a year for maybe two days at this point. Really? Just Really? Her blood pressure-she cant handle it,,what about my blood pressure and the several people I care for does that not count? My other health issues.. everyone tells me they cant handle this or that person or things and pile it all on me!!!

Again gpa doesnt believe me when the school was delayed for possible weather issues( my daughter was absent before) so he goes on and on and on abouttruth and lies etc!! He called me something like Medusa after I got mad and said I will have neighbors see her school record that she did go to school the days I said she did!!! Omg Im tired of being treated like a no good piece of crap.

But really, does anyone of you take anything or would you? I really am thinkin I need something to make me able to handle it like a zombie if you will but still function.....
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Help, anybody have Century Link? I need the code to enter to access voice mail. I setup a pass code yesterday, I need something else to access the system from the home phone. Have contacted Century Link they have not sent me a welcome package that gives me these instructions.

And through online chat, the customer service agent I spoke with apologized for the INCONTINENCE! LOL, LOL, LOL
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Glad- did you tell him thanks for the support re the incontinence.
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I simply typed incontinence?! And closed the discussion. I then found instructions online. So I am good now. But this leads to one of my pet peeves, this technical world is impossible for our elderly to negotiate. If I were not here, what would the old folks had done?!
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Booklvr, same with Hospice and my Mum, though she screamed in agony when turning her, or when a blanket brushed her, or any touch whatsoever. Hospice could not explain what was happening, but I have horrors to think of it. I cry easily about her death. Mom asked me to ride in the ambulance with her, which I did. But they made me ride up front so she didn't even know I was there. We've got to reassure each other that we did the best we could do. We could not have known. We are left with the horrible feeling of letting our Mums down, and causing them agonizing pain. No matter how mean Mum could be, that's all washed away when she was so helpless, frail and dying. I KNOW you were 100% there. Unfortunately, it made you see things nobody should have to see. You were there, and you were traumatized by it. Love to you, you are not wrong to not go to the Hospice meeting. And not wrong if you do go. It's hard to know what the make up of the group will be, and how you would feel. It could be therapeutic, or not. I know they probably want to be helpful. Sometimes soul wounds are so deep that you cannot trust a flash-in-the-pan meeting, no matter how compassionate it is. Caring to you.
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bookluvr- I understand your situation, although we DID have hospice for Mom for 6 months. She did not have terminal disease and still doesn't. She is old, has dementia, is wasting physically and mentally. The initial hospice evaluation said she had Alzheimer's (which I disagreed with but didn't dispute, since it was going to get more care for her). It was a big help to have extra caregivers, the help of a nurse visiting every other week, a social worker, the services of a chaplain, and volunteers who came regularly and were wonderful. And the bed, the 'briefs' and gloves and 'diaper' cream. Then after exactly 6 months of this (and Mom's slow, gradual deterioration on all counts) they told us Mom 'no longer met criteria' for end-stage Alzheimer's and they were discharging her. She was (and remains) completely bedridden, unable to roll over, incontinent, and (most recently) has to be reminded to swallow the soft foods and liquids she still eats. What I was told specifically was that her arm girth and abd girth had increased, which supposedly proved she was gaining weight. It was devastating. We/she lost the 'extra' hours, the supplies, the volunteers, the social worker, the chaplain and even the bed. We had to scramble to get another bed. I'm sure it was all about money and Medicare regulations, but it was just- - -cold. Like her existence no more mattered. There was a little humor about how very few people are discharged 'alive' from Hospice. Ha ha. They were so helpful for those 6 months, then- poof- they were just 'gone'. Yes, it still feels bad when I let myself think about it.
That was about 3 months ago and we are still caring for her at home. We get a total of 8 hours of care for her thru insurance, and we pay for an additional 6 hours at a high price, per week. She is in a Bermuda triangle of almost nothing available to help her. I just thank God that she has no pain and that she is still at home and seems aware of it. She doesn't always know who we (my 2 brothers and I) 'are' but she seems to understand she is safe, and loved. Sometimes the situation makes me really angry. But I try to let go of it.
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We are having freezing fog here. My daughter is stuck in California and hopefully can get home tomorrow... I will have to wait until Saturday to know if my flight will be cancelled. I hope not.

I am enjoying my time with the boys though sometimes it is very hard when both get fussy at the same time. Logan is a screamer very sensitive and Ethan is mire happy go lucky. My Sil goes back to work tomorrow so I will be alone all day but it should work out. My left arm and shoulder are very sore from cradling babies.
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Ahh, Sharyn, you are building muscle strength. And you thought those meats in the deli were heavy!
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Well it is 12:30 the boys are down I hope for at least 3 hours.
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I've been up long enough answering various posts. Quite a range of issues today and tonight, plus I wrote an essay about what the Bible says about taking care of elderly parents and grandparents along with how some people put a misguided spin on those verses to mislead and sometimes to manipulate adult children and adult grandchildren who are trying their best to be a caregiver, but are doing things in the name of religion that the Bible does not call for people to do in taking care of the elderly. Good night!
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I am new here, can I just jump in?
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Hi Howdidigethere. Okay if I just shorten your name to Howdi? Using the iPad for now while trying to uninstall the Winzip ..trying 2nd time. Please feel free to jump in.

PTSD? I don't know. I don't think so. I tend to avoid emotional stuff. I never really dwelled about mom's last days because I felt bad about it in so many ways. Just like I was so angry with hospice and her social worker - and did not dwell on it. It's a snowball effect. I think I'm finally mourning mom. I went thru the anger stage. Now the crying stage. I'm not ready to deal with hospice info. Mom has done thru it several times. Basically they do a weekly visit and then call their 24hr number when mom gets worse and do Not call the ambulance. A nurse will come over to be with us. At the time mom was dying, I needed hospice to reassure me that mom wasn't in pain. That's all we wanted. Thank you all for responding. I really do appreciate it. And yes, today, as I was thinking of mom, I became weepy.
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Cmag-you are very correct in how people will manipulate family to take care of them.

Howdi- jump in anytime.
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Since when did "agingcare.com" change? It's now so Giant and no more little note below it. Just plain AgingCare.com. It's so...so.. Plain.
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My sister is taking my mom back to the dr today to rule out vertigo. Sis asked me what combo of meds mom was taking that caused it. I tried to call her so we could talk about it but she didn't answer or call me back. I guess I will get an Sil from her later.
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Email not sil
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Book AC sent us a message the other day telling us they had made some changes plus the opportunity to take a survey on caregiving.
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