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Loss and Grief: How are you doing?

Loss & Grief | Last Active: Apr 7 12:18pm | Replies (932)

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@reibur1951

I was asked by Teresa, Volunteer( https://connect.mayoclinic.org/member/95110aa007ad79b253a017a5ebcc51b86505f8b82/ )
to move from https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/?pg=2#comment-116386

We knew it was inevitable that the Blood transfusion were only biding time - that there could eventually be a reaction to them or they would no longer work.:-

I knew something critical was happening with 6 in the last four weeks May 29-June 19 and a count of 6.5, 7.2, 6.4, 6.8 - like i said on the other thread what irked me was his comment of giving 6 units of blood all at once if he wanted them; then the trip to the ER on June 21-22 really topped it off I have no idea how I kept my cool and my thoughts to myself.... Tho its not in same location and under different name my mother worked in that hospital from 1954-1974; and her sister moved up from southern Indiana and started working there from 1968-1974 I was appalled at he being refused transport to I U Medical Center or Methodist given excuses that did not hold water - even after I said we would pay for the transport fees in necessary!

I feel we done our best on Monday June 25th getting him out of the house and down to I.U. Methodist E.R. I transported him myself in my personal vehicle with the heip of the son-in-law and son... we probably done the unconscionable in the son told him he was going if I called him back over as he and the son was physically going to carry him out I told the son-in-law to be back at 11:30 and we were gone... we had talked with son's oncologist research nurse and she had laid the ground work for our arrival at Methodist ER so we would not be refused and she talked to him what she said i am not sure but he called me back and asked about if paper work was ready he was sitting up in bed I faked that as I was not sure what he was talking about he acted like he was goign to start saying something and I just looked at him a told him the decision was his - he had to decide one way or another as his son had given up and was no longer willing to fight his lung cancer and walked out of the room - son-in-law came shortly after i told him what i had done next thing i knew he was frantically waving at me to get back there he had his pants up to knees but son-in-law could not hold him steady enough to get them up rest of way I had bought a rollator after son was diagnosed with lung cancer as I knew a wheel chair would not always be available they rolled out of beddroom inthat down the hall and when got to kitchen door of all things HE WANTED TO WALK DOWN THE THREE STAIRS and probably out to the car but he got lifted down it and rolled to the car in it.... he slept all the way to Indy tho he claims he only had his eyes closed...he made no attempt to talk so I know he did sleep all the way....

We are doing okay except wondering what we will do come winter... this place is a 1975 mobile home with major problems and a "dead horse" there are things in the works but he dragged his feet on proceeding till Feb. it could be as late as Oct. or Nov. before anything solid is known.

I have managed to get the cremation done and paid for... got into a fiasco with graves owned by his mother and him the township trustee claimed still owed money on and would not show son-in-law the books so after basically having a gun held to us and blackmailed I just went elsewhere to buy grave sites for the creamery house monument for him, his wife & 2 sons; the grave sites and the foundation is paid for... The grave sites ate up some of the monument money and I paid for the foundation out of my household money (SS) as not to cut into it anymore so will be very short on money this month but what the hell (oops) have been ever since all this started with him in Nov. 2016 and then add the sons trips to Indy since Oct.

We do expect to hear him yell for something.... miss him on the trips to Indy as he really was a real trooper with all going on with him he never refused to go until the last one for the CT-scan on the 25th he told us on Sunday we could go and he would stay home alone - but I canceled out immediately leaving a message on the oncologist research nurse cell phone.

The past two years he never really gave up but he did not want to go places only to the drs office; i did get him out to Walmart if i went but other than that he preferred to stay home.... before that we would go to the Eagles, American Legion and hear the local bands.

Like I said it was inevitable and I knew it... It was his time and he is relieved out of his suffering.... he never complained about health issues maybe he should of more... Its been a rough rough almost 2 years (all started Nov 7 2016) but so far we have managed to survive... I got to survive I promised him I would take care of his son, get him to his cancer treatments.... God will take care of us and provide for us...

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Replies to "I was asked by Teresa, Volunteer( https://connect.mayoclinic.org/member/95110aa007ad79b253a017a5ebcc51b86505f8b82/ ) to move from https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/?pg=2#comment-116386 We knew it was..."

Oh by way I drove the Boys back home on the 25th turned around went back to Indy at 6:30 in morn of 26th and stayed till I attempted to come home day he died to get son for his cancer treatment & give him time with his dad before treatment on the 29th... I never made it out of Indy before Methodist called and told me his bp was 60/? and he was having difficulty breathing I have berated my self for leaving early but it was the so-called holiday week-end and Vice President Pence was to be in my hometown where I do all my shopping so in knew there would be chaos and delays and I wanted to get son food etc in house as I was planning to take him home on Friday 29th and then immediately turn back around early Sat. morn and return to Indy... I even drove may self home after he died at 6:03 p.m.... yeah I have laid things down, misplaced etc. but I have also had to think of what/where we need to be come winter so been cleaning, sorting, throwing and packing up as I go... living in Box heaven.... had to have the son back down to Indy on the 3rd or he would of been kicked out of the clinical study and that could not happen as I promised his dad... we are back on our 3 week schedule now except is it on a Monday instead of a Friday... 🙂

Hello @reibur1951

It has been a while since I've heard from you. I hope that you are doing OK. How is your friend's son doing with his cancer treatment?

It would be nice to hear from you with an update on your grief journey. Please post as you feel up to it. I've been thinking about you.

We are hanging in.... got his death certificate and not a bit happy with the ER they only hastened his death by taking away his lasix his BNP said he had fulid around his heart the death listed primary as acute respiratory acidosis & cardoorgenic shock secondary was Hemopneumothorax, (this was caused by the CPR they should not of preformed because he had a DNR but the nurses did not relate to each other between the transfer from one flora to the other or they did not band him as such) yes i did hand in the paper work and they did find it after i they started & immediately stopped and Cardiac tamponade, which could of been the combo of the Chest compression and the fluid that was already there to begin with I should not never left when i did to come back home to get his son for his treatment the next day and so he could be with his father before hand hind-site better than foresight....

His son not sure of he been having more of a cough, the lymph node which decreased in the arm pit has grew in size, the tumor in lung has not increased but the area behind has collapsed some what the other lymph nodes affected has not changed any. They said another scan in 6 weeks but i look for it sooner he goes back for the immunology on the 5th that every 3 weeks he is tolerating it very well he tolerated the 12 week chemo very well it was a cyle of 2 chemos & immunology week one and week 2 & 3 a chemo it is to be the standard treatment for lung cancer we were told he had som hair loss and some nueropathy in his feet hair has come back - still haing some of the neropathy

Going through a lot of BS with the daughter & son-in-law he started help clean up the property walked off with stuff sold to an antique dealer brought back some cash but no receipts; walked off with some tools.... but threw a fit when I sold an old car title in my name first with my SS#; and had read to sell another that I had bill of sale for it was one that was for parts only and alot was gone off of it told the guy who bought it I had not right to sell anything... the scrape we salvaged for food and gas money and we were to use when needed so now can't do that I had started cleaning the big trash pile the daughter/son created from hauling stuff/overflow from a Good Samaritan shop but stopped when it go so hot & friend turn bad the 8 transfusions in 5 weeks from in May to day he died 28 June.... So I have switched into Bitch mode.... she called last night offered hamburger helper only but got to be careful because of the preservation and some chicken I just politely told her we would find out own food and hung up on her we are chicken ed out as we have ate a lot of the last month it as friend would not eat it could buy a rotisserie cooked chicken for under $6 and made 2 meals Social Security does not go far and what son has goes first for medical bills... but we have managed thus far to have what we need to eat...

The paper work for what I was talking about is through just waiting for the final deeds properties I have the paper the judge signed were in his moms name as yet so had me file adverse possession so I could have to take care of him, his son and get us out of here... the house he liked with wind generator is still on the market I went by it today... it hopefully will be all done within a few weeks or by end of Sept or early Oct. I hope I have been cleaning sorting, packing and I was tossing my old pans out on the scrape pile that I was indirectly told I can not sell I am trying to not let angry get the best of me

Like I said we knew it was coming that the blood transfusion was only a patch and either he would have a reaction to them or they would no longer help He is at rest now He was having a hard time with the heat and humidity those last weeks besides the 6 transfusion the last 2 were the day he died....

I know I done all I could I was the one who sat in the doctors offices with him in the outpatient surgery 6-8 hours when he had transfusions and the Er for 6 hours and then drove him to INdy with help of son with lung cancer and son-in-law drove them home that night turned around and went back the next morning... and was with him when he died.... I got to hang in and be there for the son...

God gives us no more than we can handle and he will provide....

@reibur1951 It sounds as if this has been a difficult time for you, I appreciate your checking in. You have done an admirable job with your friend's last wishes and helping his son.

I do hope that soon you will be able to take a break and relax just a bit. Please feel free to share whenever you can. Sometimes just posting the words can be helpful.

Thank you I am trying to fulfill them - down to the crematory house monument and hoping all the paper work will be settled within a few weeks. That will be the biggest hurdle past as getting out of here before bad weather hits is biggest concern I do not think I can do the wood stove routine this winter 24/7 and it not being warm in here... there is enough holes/cracks to choke a horse... windows are rotting out, floors were the glued sawdust crap and are deiscenigrating or descenigrated and loos plywood thre on top of areas - kitchen was only room got re-done down to the beams 2 years ago and lived over a year with out cabinets and a kitchen sink and all those only bottoms are second had make shift (that's when the friend got diagnosed with not making blood and he came first; other problems too and tore bathroom up in July/Aug of 2017 and its still the same there is a big hole under the bath tub were the glued sawdust flooring has just rotted away of course plans were to have it completed within 2 months but the semi diagnosis of son hit - he had been coughing and I forced an x-ray in late Sept followed by a CT-scan and drs. office called back with saying thoracic surgeon and biopsy and I said IU Medical center since we had such hassle with his fathers hematologist and its the only major hematologist/oncology practice in the area offices in 5 6 cities/towns where hospitals are and I wanted better communication etc. than had IU Medical SImon Cancer Center is the greatest I just wish could of gotten friend (his father) down into the hematology department sooner it was in the process when I drove him down to Methodist ER the one hematologist was planing to do another bone marrow biopsy to do their own assessing but was in process of being scheduled day he died 🙁 Only regret I think the second opinion we had should of been there instead of where it was because it was within "the circled area" of the hematology/oncology group practice. Hind-site again was better then fore-site... Lessons learned the hard way

Been doing just as "free boxes" come around I may end up having to buy packing boxes or either wait till moving starts empty out what I have packed and come back here re-pack but hoping i don't have to do that routine as I want time to go through sort again. I means getting furniture as have bare minimum here since it is a mobile home At least its done and won't be all at last minute... o nly leaving the china closet and closet and some other things for that. And of course there is the every 3 week immunology next trip to Indy is Sept 5th next ct probably in mid late October but look for it to be sooner could be wrong have been having every month maybe a little over...

Just have to have faith in God that he will provide and keep all things going in the right direction.... main thing is a decent place to live and have to provide home care when that time comes if it does....

@reibur1951 I do hope that you are able to secure more a habitable living situation soon. Any thoughts right now as to what might be available? Am I understanding that your friend's son lives with you now?

Yes there a two up just up the road a few miles... both nice and closer to town, quicker ambulance service if needed, all on or near the main highway #1 is on the corner of 2 major high ways is s one story brick with basement and 5 acres which is wooded for now but also in the near middle of an annexation to the nearby town and further away from here #2 is on the corner of major highway and a country road, is on less than 2 acres, has lots o f windows and has wind generator assisted electric my friend like the later #2; #1 believe it or not is more than #2 plans before he died was to get #2 is was still available when all the paper work came through to transfer properties to my name and then sell one piece that will cover almost all of the wanted of either 2 was plan for all of us to be together this
winter friend & me and his son to lessen households, care, travel etc. The unoccupied piece of farm land already has a pending buyer they would of bought it in June when friend was at IU Methodist - they called the other night and I told them I had the decision just the final paler work making it fully legal was to be filed the buyer has jumped the gun so to speak and having it appraised and getting a loan on board between hem and his brothers they own most of the land around it and have cashed farmed it since the 1970' maybe earlier between them & their father. So all is just how fast the wheels of legal procedures grind now... they at least did not stretch out till October or November as I had envisioned by what has happened it should only be a matter of weeks... One reason been cleaning packing and if the 2 pieces are still available especially #2 I think # will be more beneficial as it would be set up for generator power if not I will have it down so we won't be out of electric etc during power failures which have been famous during the last few years in that area. So far we have been very lucky out here that last few years they only have flickered off and on enough to screw-up all the computerized appliances/Tv/satellite but before we have been out for hours and up to 3 days before REMC got around and being on the end of the line does not help

I check the sign every time I drive by to see if... so far no one has nibbled that I know of so keeping fingers, toes and what ever else crossed both will be available when the paper work lands... I will use same bank/banker as the buyer as they can flip all properties over for the cash & the other 2 properties up as collateral for the unpaid portion as need part of money to finish up friends wishes... the saying is "the best laid plans of mice and men" but can go haywire and spring a leak along the way... i am to much of a black/white person its got to be on paper and there....

Why been boxing up as if all fails I am still out of here so can carry out plans some how... God will take care of it just maybe not way I have planed and I will just have to accept that and draw up another plan when this one fails....

@reibur1951 You are so wise to have contingency plans! It sounds as if you have enough opportunities and choices that something will surely show up when you need it.

I am not sure what the "contingency plans" are but there are enough houses for sale.... tho he and his son was and is totally country but if houses fall through it may have to be rent in town for winter months I have not looked into any other nearby country but keeping eye on both these so far in over 3-6 months they have not moved so hoping.... will manage some how just hate to think os being here another winter with the problems and just wood heat the cost of the wood/electric combine was way too much and was not totally warm and i stayed up 24/7 to insure it and going to friends cbc blood test/transfusion on little or no sleep at all which was not bad it was within 40 miles but doing it and goign to Indy which was an all day thing and 200 mile round trip but i survived it I just keep praying as i go past the first sign the wind power house that its still available as soon as i hear anything i am sure the wheels will turn fast... or rather hoping they will most is ready here except for packing up china closet, and bedroom closet which right now has boxes atacked in front of it... i call it "box heaven"

reibur1951 I am sorry to read of your friend, I lost my husband of 67 years on May 4th. It''s not fun to lose someone you love. I'm sorry for your loss. Nancy shortshot)