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Well its been a little over two weeks since my Mom passed and I'm still not doing very well. You know all my life people used to warn me that I should distance myself from my Mom. I remember one so-called friend saying to me "I don't even like my mother and I'm going to be sad when she dies, you are in love with yours so I can imagine what you are going to go through"

Although their advice was probably well intentioned I didn't heed it. I enjoyed my Mom's company more than anyone else I knew and we were more than just Mother and daughter. We were best friends.

So now here I am, two weeks after her death and I'm thinking yeah, maybe I should have found other friends etc. etc. My brothers and sisters have always been distant and aloof. They seem to have gone on with their lifes already. One or two calls the day after my mom died and that was it.

I have a husband who is getting very impatient with me and I am like a record player stuck in a groove right now. I can't seem to move forward.

Any suggestions anybody?
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It has been a long sad day today. Mum has been weeping that her daughter (me) doesn't know where she is and why would she leave her alone. Begging me to phone etc. Having much longer naps and such shallow breathing. I like the idea of a place we could all get together, but failing that for me this site is like a lifeboat in a stormy sea.
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Susan don't worry too much about mom being without her blood thinner for two days till you get that phone call. it takes several days for it to get right out of the system

Shilio the anesthesia they use for endoscopy is actually conscious sedation not the full anesthetic used for big operations. The patient comes out of it fully away within minutes. There is no surgeon involved the GI does it. there will be an anesthesiologist in the room and she will have to be cleared for anesthesia but the after effects should be minimal. the whole thing should only take about 20 minutes, another 30 in recovery and all being well home. This is a procedure usually done without anesthesia just with sedation. Hope all goes well.

I had researched the INR testing at home and will now go ahead as my PCG is moving to an office 30 miles away and I want to still keep seeing her . I know how to adjust the dose myself so no worries there if there is a delay in communications. i pretty much did it when there was a FNP cover while she was on maternity leave and they were often a day late calling. We have an internet system where you can get test results online and send messages to the Dr, request appointments, drug refills etc. hubby complains about it but i actually find it easy to use and very convenient. I believe the whole country will be hooked up like than soon. Was supposed to happen this year but as usual things take time and a lot of practices had trouble affording the system.
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Thanks Dee and Veronica. I have felt the esophagus is most likely involved for awhile now just have to find out for sure and to what extent. Her PCP cringes at the idea of her being under anesthesia. He said the surgeon may not be willing to do the endoscopy given her health problems. That is why the swallow was done since it was less invasive then the endoscopy. Now it is a wait and see what to do next. She has been drinking ensure but not enough to get all her nutrition in for the day.

Veronica - I used to test my mother's INR at home when she was on Coumadin. You could either call it in to the company or sign-in on-line and enter your reading which was much quicker than the phone call. It worked well if you didn't have any problems. I didn't run into a problem until I came across a bad batch of test strips and had to call the company for help. They talked to me as if I didn't know how to use the equipment at all and made me go step by step through the procedure retesting my mother. In the end it was faulty test strips, not faulty tester. They sent a new box of strips and problem solved. Of course, the company tried to bill Medicare for the extra strips which I was nasty enough to call Medicare and tell them the strips were a replacement box and should not have been charged. Medicare reversed the payment to the company.
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Susan - If your mom does qualify for Medicaid, they will supply a certain number of briefs, pads and wipes each months. Each state is different on what supplies and the quantities are allowed. Have you asked the doctors office for samples of the Xarelto until you get a chance to discuss the medicine with the physician?
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Susan use incontinence sticky on pads inside the pants - I have got down to one pair a day that way. You do use a lot of the inserts but its a h*ll of a lot cheaper than buying pants. I buy the supermarkets own brand and it is MUCH cheaper than using the pants only. You need to get the maximum absorbency and the long one but they stay in place (failing that your mother gets an unexpected brazilian!) and they just work for us. Might be worth a try. Also you need to cream the labia with some form of barrier cream after you wash and dry her or she will in all likelihood get quite sore. I used to use vaseline but was warned of that and now use epiderm (although in my opinion the vaseline worked far far better). Have use cavilon but thats just not sufficient.

XXX
Good luck hun
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Darn it, hit post too soon.

I did get the Inter-Dry ordered, as well as mom's incontinence briefs (finally found some that fit - hallelujah!!) - the briefs will be here today, and not a moment too soon, because while the NH was kind enough to send 2 packs home with her, they were the wrong size - 2 sizes too small - so I have had to rip those down the sides to open them up like a diaper and use them in her regular underwear like a pad - which is NOT working very well. I'm back to washing 10 pair of underwear and 3 sets of bedding every day until the right size briefs show up today.

Once the Inter-Dry gets here, we'll be in good shape as far as supplies go. The darn briefs are expensive, and I wish the doc at the hospital had been right in saying that Medicare will pay for them if she puts in an order for them, but that's not true. (I knew they wouldn't pay for them in the past, but was hoping that by some miracle, that rule had changed. Yeah, right....) So now it's going to be about $140-$180 a month for her briefs instead of $80 for the pads we were using. There are 12 briefs in a pack, and she goes through 4-6 briefs a day, depending on the day (especially now that she's on Lasix), and the cheapest I've found them is around $12 a pack if I buy them by the case. So in the past week, I've laid out $65 in prescription co-pays, $60 for a starter supply of briefs and $65 for the Inter-Dry. And now I need to buy extra sheets for her hospital bed, because we only have one fitted sheet that's the right size.

I need my helmet. And a glass of wine. Heck with the glass...leave the bottle.
(and before anyone thinks I'm an alcoholic, I'm being facetious.)
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Tried that, Jude. Two of my former clients - who I rate, which is why I approached them - run those combo developments with sheltered housing, residential care and dementia care all in the same purpose-designed development; so when we decided to put the house on the market I called them and proposed getting a two bedroomed apartment for mother and self. No go: they have some catching up to do. Minimum age (they're exempt from the relevant equalities legislation) is 55, and below that you can't live there.

Which, after I'd mulled it over a while, left me wondering: who lives in the two bedroomed properties? Married couples who don't like each other much?
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Finally getting the gutters cleaned and windows washed today by our local organization for the aging.

Mom's home health nurse can't come until the transfer to a new doctor is complete, so that means until the records are transferred, no home care and no physical therapy. GRRR. Trying to expedite that process. I can't exactly run the records to the new doctor myself because I can't leave mom alone and the new doc's office is almost 30 miles away. (No one in our wee little town was accepting new patients and that's the closest one that will take her.) And to top it off, my printer crapped out on me and I can't print out the form the old doc's office faxed to me, so I need to install my new printer (luckily, sitting right here in the box waiting to be installed) before I can get that back over to them and get the ball rolling on this. (I tried to get her transferred while in the nursing home but I never managed to catch the doctor to talk to him about it while she was there.)

The Xarelto question is still in the air - I called her cardiologist's office yesterday first thing in the morning, and was told someone would call me back later in the day. No one did. I called again this morning, because now Mom is on Day #2 with no blood thinner. This time I was informed that the doctor is *never* in the office on Tuesdays, so whoever told me he'd call yesterday was wrong. GRR! So now I wait until this afternoon for a call.

The change of doctors came at a bad time, but was necessary - even the homecare nurse agrees that her old doc's inaction could have easily cost my mother her life, had I not made the decision to push for more tests. Now we just have to deal with the red tape and hassle of getting her switched over and then things will move smoother. Hopefully.
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So what we need is a village built especially to cater for elderly people AND THEIR CARERS. Somewhere pleasantly warm the year round with fresh food and water on tap as it were. A HUGE coffee shop so we can sit elders and carers separately be they in beds or chairs (elders that is not carers) and preferably with sweet natured maintenance staff, Doctors specialise in geriatric care, sweet natured hospice staff to support us in our hours of need, a respite area so we can get a break periodically and sweet natured social workers. And if there was an automatic buyout after the inevitable that would be just the icing on the cake ......Not sure whether that's utopia or I am just entering the la la land myself but that would be so so good.
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Jeanette, thinking of you and your mom.
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Shilo, Veronica describes my mom's achalasia...same symptoms. She goes in periodically for outpatient botox surgery - they use botox to relax the esophageal sphinchter so food and liquids can move along. It lasts anywhere from 6 months to 2 years. It works. Good luck to your mom.
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Jeanette, my mom passed on mother's day this year. Although it was extremely hard, she went very peacefully in her sleep. I was standing right there at the end of the bed when she took her last breath. There was no pain, no suffering, nothing. I was told by hospice so many horror stories and I was so scared she was going to suffer and feel as if she was drowning and I just did not feel I could handle it. I heard her through the night breathing differently than usual and I knew something was different.

I guess what I am trying to say is that a peaceful passing is so surreal that it will almost make you feel relief. I so wish I could be there with you to keep you company. I know how scared and afraid you must be right now. I had called the hospice nurse and she was here taking her blood pressure when she passed so there was someone in the room with me. Please know that even though you are there alone, there are so many of us here that are with you in spirit.

My prayers and thoughts are with you!! Please take care of yourself.
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Imagine how much better it would be if we could all be together. Of course, we would never be able to talk our parents into it, but we could visit back and forth and sip coffee on each others' verandas.

It's a tough day here. One of my pet rabbits died. The two rabbit vets in the area took the Memorial Day weekend off, so there was no one that would help. He died last night. My room is so empty. People prayed that he would make it until today. I asked God to let him stay. But he died anyway. I'm feeling a bit sad this evening, like God, couldn't you let me have this one little thing? My little girl rabbit doesn't know what to think. She is confused and sad.
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Jeanette I'm so sorry you are alone during this time. Is there no relative or friend that could come and stay with you. Know that all of us on this site are thinking of you. If I didnt have to take care of my brother I would be on a plane heading your way. With all that you have done for your mom, I know you are surrounded by angels; let them give you comfort and peace.
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Shilo it sounds as though Mom has some kind of stricture in her esophagus. they will probably want to do an endoscopy where they put a tube with a camera down her throat to see what is going on and take biopsies of the esophagus and stomach. Don't worry she will be heavily sedated and won't know anything about it.
If there is narrowing of the esophagus and they see nothing else they can stretch it out during the proceedure and that should make it easier for her to get the food down. Also depending on the final result of the swallow test they may want to do an MRI or CT scan. Try not to worry too much till you know what is really going on. You could be worrying unnessecarily and if it is serious there will be lots of options. For now keep her on a liquid diet. Use things like Ensure and make nutricious shakes. Tell her to take small sips at a time. Using a straw might help and make everything at room temperature. If she agrees they may suggest a tube down her nose to tide her over. It is not the nicest thing to have but she will get used to it and feel better with food inside her. As she is still hungry and wants to eat that is a very good sign. Hang on to hoping it is strictures in the esophagus and they can easily be stretched. The weight loss is totally consistant with her not being able to eat much and once the problem is fixed she will pick up the weight.
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Waiting on results of a test my mother took last week and it is not easy. Have to wait until June 3rd. The past 6 months especially have been difficult and she has lost over 50lbs. I was given part of the results of the barium swallow test but what it means and where we go from here does not look good. She swallows alright through the throat but when it hits the chest the food just stays there. That is the area where she has consistently been complaining of pain as soon as she swallows pills or food. Sometimes she will take one bite of something and say that is enough. She cries out that she is hungry much of the time but afraid to eat. My dad past away years ago. He had cancer but really died from malnutrition. Watching my mother this way is bringing back painful memories.
Brought her home from the hospital March 26th. Still waiting for the aide service through Medicaid to start.
The nurse from the in-home-health service was suppose to show up today but hasn't and hasn't called either. I guess I change the gauze from her IV wound myself again. It has to be repacked daily.
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Jeanette having Mom admitted to a hospice facility is not a failure on your part. it is a smart decision and if Mom has been snoring for four days she won't know she has been moved anyway. You have been so pleased with your hospice I am sure their facility is a loving place to take a final breath. It is not like a hospital. they try and make it as homey as possible and there will be a quiet place you can go and be alone. She won't be bothered with regular vitals or things like that and they will take beautiful care of her. I think now you do need the support to continue to be strong for Mom so go ahead. It may be the best thing you have done for Mom so think about it and call.
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Jeanette, know that I am thinking of you. {{{{HUGS}}}}}

Jude, I am crying reading this..but how beautiful that is.....Thank you for sharing it.

I am having an emotional day. Mom is out of delirium and coming home next week but I put her into hospice today because she has so many health problems going on....I know this will be better for her, but it is emotional none the less.
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Jeanette I know how you feel. There were a couple of nights when I stayed all night at the hospital that I felt I was losing my mind. Your mind plays tricks on you when you are staring at a loved ones face constantly and watching the minutes tick by. Even though I didn't want to I had to leave sometimes and get some rest. As it turned out it was during one of these times that my Mom passed. As many of said on here thats often when our loved ones will go.

I wish I had some words of comfort for you Jeanette but others on here are doing a wonderful job of that. Just know that we are all here for you when you need us.
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Call the hospice Jeanette. You can still go and be with her but you will be supported by staff who deal with this for a living. You will still be doing right by her sweetheart. And I hope, if you do see her bright beautiful eyes once more that they are shining with the glory of God darling. You see she is passing through the gates to a place far more beautiful than we can imagine.

I guess this could set you off again but I think this poem sums up how many feel about their own death:

Do not stand at my grave and weep
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.

Mary Elizabeth Frye

I think that is such a beautiful thought - that we do not die but indeed are immortalised in nature. Something very flippant came into my head then but now is not the time or place thinking of you Jeanette xxxxx
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Hey all.... have I ever told you how extremely grateful I am for each and every one of you lovely people? Well, I am. Thank you so very much for such wonderful support.

Gershun, thank you, that was a lovely vision you gave me. I pray with all my heart, that daddy and all her loved ones whom passed are there for her, it's been such an awful few years for her here on earth ya know?

Yes, mom is still with us, bless her heart. She has been sleeping (snoring softly) for 4 days now. I pray even harder she passes in her sleep. Don't think I could bare to hear any sort of moaning or - or... anything that remotely sounds like suffering or pain. As wonderful as it would be to see her bright blue eyes one more time, I just don't think I could make it through it... I'm hanging by a thin thread as it is... I wish I had someone here with my 24/7 right now. I don't want to be alone. I'm scared. I want to bury my head an hide. I was panicking this morning and desperately wanted to call Hospice an have them transport her to their facility...I don't want to do this anymore, I'm not that strong ....I hate myself for wanting this to end but dear God I do. I'm sorry, not having a good day...
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Well glad if it is any comfort she may not have to do what YOU tell her but she will have to follow the rules in her community or experience a "higher level of care" which she will like even less.
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With my days numbered at three here now, for the past two weeks Mom has been out of bed between 6:30 and 7:00 am! Just a first thing daily of how much more difficult this is becoming. The norm had been about 9:00, ask her to go back to bed, turns to childish behavior, I don't have to do what you say! Thank God it is almost over!
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gershun i have some wired beliefs but my feeling is that the spirits you were experiencing were actually in mom's room and had she been able she would have been telling you who was there and talking to them. I believe they are spiritual guides and very comforting. It is very common for dying people to tell their caregiver who they can see. it is usually deceased loved ones but sometimes complete strangers who just pass through the room. It is also very common for a pet to stay at the bedside. Any Scottish reader will remember the story of Greyfriars bobby who stayed at the graveside of his master till he died.
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when my mom reached the stage of terminal agitation , minutes before we gave her the " comfort " meds , she was addressing her long deceased brother johnny in her bedroom . i dont read a helluva lot into it , i believe her brain had shut down till only childhood memories remained . if not , why didnt my dad appear to escort her to the afterlife ?
either way , i was relieved ( for her ) to see her reach the end of her travels . if dementia hadnt of killed her kidney cancer or heart failure were going to . as it was she didnt die with physical pain , only delirium .
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Remember the movie that Dustin Hoffman was in, Little Big Man? I loved the scene of the grandfather Indian who one day looked up at the sky and declared, "Today's a good day to die." He walked off to die on a mountain but in the movie he returned to his village to live a longer time in the movie.
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Jeanette I wonder how you are doing. Is your Mom still hanging on?

One thing that I forgot to say in my post to you yesterday was when I was sitting by my Mom's bedside during her last days I had this picture in my mind of my Mom's loved ones on the other side, my father, her brothers and sisters, by brother etc. I envisioned them urging her on, excited to see her and then me sitting by my Mom's side crying and wanting her to stay. For some reason I thought "maybe Mom is lingering cause she knows how sad I am and how much I'll miss her but she also wants to go and be with her husband and my brother etc." At that moment I thought she should go and be with them and I told her that.

I don't know why I'm telling you this. But maybe it will make it easier for you knowing that people are celebrating up there cause they are happy to see her and when she passes you will have one more angel looking out for you.
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Thinking of you, Jeanette.
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Jeanette, my heart goes out to you. You have given so much love to your Mum, I hope for both of you that when the time comes she may slip away peacefully.
Don't doubt that you will cope, everyone here knows you are are strong . Hugs.
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