I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: The Noob on August 26, 2011, 06:53:06 AM
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so, i have been bending MooseMom's ear and thought i'd also see if i can get some feedback from the rest of you. i didn't want to keep venting on Mom, though she is a special lady and doesn't mind. :cuddle;
we have been at this almost 2 years, 3 counting the year DH was going downhill. during that time my son and have done it all. the last 2 years has been a nightmare, though it seems to have leveled off a bit now.
we hustled and got all the transplant crieteria done over a few months, as well as keeping up with D 3 times a week and everything else that goes along with living.
every week it seems to be something else the transplant clinic wants. now they want to read the kidney scans. thought that was reason we had it done? but they only do this twice a month. hoping to hear something next week. the living donor nurse will not return calls to our living donor. "fed up" is a good description.
my daughter and her fiance were tested to be donors and they were both a match. however, i just found out i will be a grandma again! so the young man will the donor and is still hyped and wanting to do this.
i'll try to keep this just the nutshell but forgive me if i drone on.. :urcrazy;
we have two properties. one is an old house with no insulation that is literally falling down in spite of my best efforts. but it has a little more land, for the horses we have. we heat that with coal, which has to be gone and gotten. i would do this every week during winter. at least one hour there and back, after lifting 400-800lbs of it in bags. son unloaded when i got back. for those of you living in the north, you know what driving in this is like.
this doesn't count groceries, meds and all the other errands. we are 10 miles from anything. i did this through the last winter as well as driving DH to clinic during ice storms, blizzards, etc. which at times could take 2 hours to get there one way due to weather and road conditions. on one trip, in the truck, going 10 miles an hour, the truck spinned 360 degrees on a main hi-way we were on. luckily there was no other traffic on road. we got to the clinic and one of the nurses was shocked at the amount of ice and snow on the truck. after i dropped him off, i went and bought more bags of coal, groceries, etc, heaping this over the back as the tailgate was frozen. this was a constant and many times i sat in the frigid truck feeling like i was having a heart attack.
for the most part of 3 years my son and i have had almost no life except hospitals, doc offices and clinic, and keeping up with DH medical stuff. we were hoping some of this would be alleviated by the transplant?
last winter we were frequently snowed in and son and i had to push the van down to the road (3 acre long driveway) so we could then walk DH out to the road next morning so i could get him to the clinic.
we had a late night ambulance run that i had to put him in the van and drive out to the road. then transport to different hospitals. then 4 days in ICU 1 and 1/2 hours each way. i had to come home twice for PD supplies. the coal stove went out often and i had to talk son through re-lighting it. once he was outside bringing in coal bags and fell and was injured. but i was hour and half away and couldn't help. he is a big tough kid but a kid still. its been so hard on us even though we have bared up well. the PD did not work and DH has been on hemo at clinic since November.
medical bills are piling up. we only have so much money coming in. i have my own health issues as well as my son.
we have no help available.
so, i spent months discussing this situation with DH, with his constant reply being "i don't know".
i collapsed in march, literally. so i made the hard decision to go over to the other place and fix it up for the next winter, after i had some respite for son and i. this place is paid for, well insulated and a big place, though only an acre. but we have neighbors over here who we could ask for help in emergency.
what i asked DH to do is just close that other place down, board the horses for the winter (hay is expensive and the 100 ft hose has to be drug out to water tank daily in all kinds of weather, hooked up, fill the tank and then un hook and haul into the house so it doesn't freeze) and stay here, just for the winter. we can reevaluate what and where we are in the spring. (we did live here for 18 months and i loved it but DH wanted more land.)
this place is heated with wood which is delivered and is much cheaper. wood in small chunks is light and is easier to bring in.
i spent the summer painting, cleaning, building, getting wood and food in, and now have it ready for winter.
to me this is the best option. the light bill here is under 20$ a month, vs 500$ a month there with electric and coal. annual taxes here are 140$, vs 700$ there.
i have it fixed up clean and cozy, all ready to go. the driveway is 50 feet. they plow this road regularly, where they do not the other place. all dirt roads.
i have hi speed internet here too. i could have sat dish for tv hooked up quickly. we could stay here and be very comfy and still save over a grand a month.
my grandma and brother out of state have been very ill. grandma has cancer again, brother just out of icu in diabetic coma. i would like to visit them before i have to attend a funeral. but staying over there, every dime and every bit of energy go to that place. my grandma raised me, she is like my mom. i miss her.
i am not asking him to sell the other place, or give it back. we bought it land contract, the farmer knows our situation and has assured me several times that he will take the place back no questions asked.
i am just asking him to come here for the winter. my son and i have had many discussions on this and he is in agreement with me. he is homeschooled and in his last year and i have things to do for him to get him ready to graduate next may.
of course, DH wants everything to stay the same. and i do sympathize and understand. but i have to be reasonable as well as to what i am able to do and what we can afford.
if/when the transplant happens, if he does well, he can go back to work, we both can. but as a former paramedic, he is told that will probably not be an option as he will have to avoid very sick people and being out in sun too much. his options are good for other work, but can't get him to even think on it. not to mention work is scarce in this area.
basically, i am expected to keep doing it all at any cost, so nothing has to change. i'm sorry, but the reality is that things have changed, and we have to adjust and make a new life. i have sat with pen and paper figuring all the pros and cons out and this is our best option for now.
i've spoken to the SW at the clinic, who is sympathetic but tells me there is nothing i can do. he is an adult and has to make his own choices. i agree and have tried to encourage him to do this all along.
is this going to come down to me staying here with my son alone? i don't know. i'd like to be able to see my children, grandchildren and other family once in awhile. i have no insurance myself and need to go back to doc for my diabetes and other stuff. i know what i am capable of and in kind, have set up what i believe is the best alternative for now, for all of us. however, DH still remains adamant against it, while still expecting me to do it all.
he is not able to stay there alone. there is too much work. at least once a week he doesn't feel well and wants me to drive him to clinic. i have to stay there all day as it is too far to come home and go back again. this means my son is home alone doing all that needs done. which he does, but we have little oppty to do anything else.
any feedback would be appreciated! i apologize if its TMI. it is what it is. :grouphug;
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Gosh, I know what I want to say but I'm not sure if I should. I hate to sound like a heartless b!tch (I have standards to maintain, after all) but this has really got me irked.
What a plonker!
Sorry, I realise he's your husband, and I realise that he's ill. I understand that he's scared of the future and that he's (probably) trying to hang onto the land because to give up on it is giving up on himself, but really ...
You've made it clear that it's (initially, dependent on what happens) for this coming winter, that it will help your son get through his graduation, that you ALL benefit in EVERY way (psychologically, financially, medically, emotionally, etc.). IF the transplant can go ahead soonish then you've got to juggle a pregnant daughter (congratulations!), a recovering SiL, a recovering husband, homeschool your son, look after EVERYTHING and worry about other (more distant) family members.
Isn't it a no-brainer?
The evil part of me says that you and your son should move to the other property for the winter and leave him on his own; he'll soon realise what a numpty he's being. However, I know you won't do that (and I wouldn't either) because the consequences could be awful and you'd only end up picking up the pieces anyway.
I really feel for you. You're stuck between a rock and a hard-place. Why won't he compromise for the winter? What's his biggest issue? Which would he rather lose, you or the land? I really feel for him too; you're both going through something that is potentially life-changing, yet only you seem able to acknowledge this.
So, despite this rather long reply I'm afraid I have no advice and all I can offer is *huggles*.
:grouphug;
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well Poppy, i am grateful for your reply!
he says he wants to hang onto property, no prob rob, staying at other place is just for winter.
other than that, its just more of "i want what i want when i want it"..
yes, i will stay here either way. i have to. i have bone spurs on my spine and have now ruptured the Achilles tendons in both feet. i am having hard time just getting around. this happened also right after DH was first hospitalized. it took a year to heal.
please people send more feedback! thank you poppy!
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Like Poppy, I agree that YOU need to make the best decision for your son and yourself at this point and it sounds as though you've already twisted yourself into a pretzel trying to allow your husband to have what he wants when he wants it. ENOUGH ALREADY. Life usually involves compromise for a number of reasons and his chronic illness should not be allowed to take you down with it. The other thing is that if anything were to happen to you, he couldn't manage and therefore change would necessarily occur. As heartless as this may sound, I'd give him the ultimatum of having to stay there and manage on his own and that would need to include HIM setting alternative support systems for "emergency" situations.
I feel sure that you would have preferred a life that could have stayed as it used to be, without an ill spouse but there it is, that's what you have and he needs to face up to the fact that nothing stays the same. You can sympathize with his feelings of loss but you need to take care of yourself too. Period.
:grouphug;
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I agree with Poppy and Morein, you have to start thinking about yourself. and your son, and what is best for all of you, says she who is getting tired of doing all the things like you. I sometimes think our ill spouses think we are wonder women/man. I believe we can go on for so long until we run out of steam. I think that they get a little selfish over time being ill, they do not mean too but there it is. I would give him an ultimatum, tell him to try a winter at your other property and if he doesn't like it he can do the next winter on his own. Yes we all have to make sacrifices but that also means you have to be realistic. I wish you luck, you are going to need it. Thinking about you.
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First of all, my ear is just fine! It has not bent out of shape. LOL!
When we marry, we take vows to look after each other. ESRD doesn't give you an out. ESRD doesn't allow you to abdicate. He promised to look after you, and he is breaking his promise.
We'd all love things to go just as we want them to go, but even the healthy amongst us are not immune to the tides of change.
By moving, you WOULD be taking care of him. You can't take care of him adequately in the old place. You've already spent one winter doing that, and it was hazardous to all of you, not just to you, but to HIM, too! Now, you know this! You've already made up your mind about what to do because you are not stupid and you have not forgotten how rough it was last winter. What you are looking for is permission to do what you already know needs to be done, so by the power invested in MooseMom and all of IHD, we grant you said permission.
Go to the other property where it is safe. Leave your husband with whatever he needs in an emergency, especially a way to contact you swiftly and efficiently because he will soon come to realize that his choice to say is unwise and unsafe, and he will need you to come rescue him.
Just thought of something...how often does your hubby spend at the fixed up property? Maybe you've already done this, but could you all spend more time there over the next several months so that when you have to finally move there for the winter, it won't seem like such a drastic step for your husband?
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well ladies, i was scared to put all that info out there like that, but was at the end of my rope!
i am so relieved i did though and am once again reminded of how intelligent and funny and insightful you all are, thank you! :grouphug; :grouphug; :grouphug;
so heres how the day went. i ran to town for errands. DH calls me, as he always does, when he is done with D and ready to drive home. 35 miles. he is not on any BP meds now and his BP is always very low. today it was 75/57 and they walked him to the lobby and turned and left him standing there. he was barely able to stand, so he sat for a bit. then he went to arbys and called me from there. he got some food and drink. i offered to come get him. he said no. he got home about an hour later, barely able to get out the truck and come in the door.
while he was gone, son and i sat and discussed this again. he said "look mom, i know all of this, i am just wondering when one of you is gonna make a decision".. :rofl;
so he and i did. after DH got home, and we got him settled and his BP up a bit, son and i just in a relaxed voice said we are moving over there for the winter. if you want to come, great. otherwise your on your own.
DH says, OK. lets do it.
so son and i then spent an hour moving a few things over. we don't need alot as its just for the winter.
now i am cooking a good supper and they will be here in a bit to eat.
yes, he did come here a good bit Mom, always griping and complaining.."oh its too clean" "oh its too quiet" "oh its too roomy" "oh its too cozy"..well dang, you just can't please some people.. :banghead;
so its done. and i will tell you what we are talking about here as well, abuse. there comes a point where the caregiver ceases to have no rights, no needs, and becomes an appliance. and with abuse all appliances wear out.
i want to love my husband not think of him as my patient. so i have to draw the line in the sand.
and Mom thank you for your humor! LOL all of you, such talented insightful women!
today i did have a little time to actually stop and look at baby clothes. bought a pack of newborn booties and a card and sent to my daughter and her man. they are very loving people, calm and gentle, tender and sensitive, they will be good parents..and i am so excited and hoping for a grand daughter. my daughter wants me to go next week with her to first ob appt as daddy has to work.
i have a large victorian doll house i am finishing just for the new baby. i am 48, and have been in menopause for the last 18 months. no issues other than tired and hot flashes. i am strong as a rock. course if the baby is a boy i will have to change the gifts, but can't wait! they both told me they were giving my name as middle name to baby..i am so humbled..
thank you all again.. :grouphug; :grouphug; :grouphug;
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ps: this building is an old grange hall. sturdy fortress. pre-civil war and part of underground railroad. people come by at times and take pics and ask for tour (no sorry)..
there is a huge ballroom upstairs with wood floor and a stage even. plus a large bedroom the size of some peeps homes.
theres a beautiful large staircase with a foyer, and big foyer downstairs. then a smaller bathroom and then the great room. this place is total 4000 sq foot.
when we lived here before we put in the biggest and best wood stove and triple wall chimney, and were given for free, a wood/coal cookstove. we are deep in the middle of an old order Amish community.
this place has a little over acre and half, and there is a small livestock barn and dry lot. i have chickens and ducks and cats and a dog here. i used to have milking goats and rabbits.
tonight i'm cooking fresh corn and green beans i grew. there are flowers, glads, on the table i grew and flowers in pots on front porch. and a deck off the back to the patio set i got for 5$ at a yard sale.
i am very happy here. he will be too. he has committed to the winter so we'll leave it at that.
i enjoy working outside and waving at the buggies when they go by. we have an old cemetary 1/2 mile away where we used to walk to and pick berries. it on a hill and quite pretty.
its very rural. but if i need something i can ask my Amish neighbors and they will come in a skinny minute. i go down to visit them too and just about anything i want or need can be purchased within a mile. fresh bread, vegs, eggs, dry goods, and it is not as isolated so my son will hopefully have some company too.
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Well, knock me over, he was just bluffing all along and wanted to someone else to decide..so now he can complain about someone else's decision!!!! Good move and the place sounds amazing...I hope you all have a good winter..but try to enjoy the rest of summer and fall first. :cuddle;
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thank you! and your spot on girlfriend.. :cuddle; :cuddle; :cuddle;
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Way to go, I am so pleased you have got things sorted out. he will be OK and tuff if he isn't. Your property sounds amazing. You will feel much better now knowing you are not so isolated.
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Good for you, Noob...glad it is working out for you. I agree with BB...your home sounds amazing! :grouphug;
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hey, we just got back from DH's 40th high school class reunion. it was really something. we had a good time. he had to go out to the car and put his feet a couple times (low bp) but i knew he'd regret it if he didn't go.
out of a class of 71, in 1971, half were there. 5 were deceased. we all chatted and laughed and i heard all the stories, we had a nice meal and then the band came on. we stayed for 2 songs and came on home. everyone was great, wished us well with the hopefully upcoming transplant. his ex wife was there and gave me a hug for bringing him. i took a pic of her and him and everyone else. they want to do another in 10 years, now that should be interesting..
we at the farm tonight as we will try to do some moving light stuff again tomorrow. i let the boy sleep in and went for the hay this morning. we stopped at the other place to get my dog and laptop, and its stood there majestic, warm, inviting and safe.
i got a free 7 ft christmas tree with light on it for free and put in in the great room.
thank you all so much for the great feedback!
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DH says, OK. lets do it.
Love it! Not such a plonker after all, then!?
Noob, if I ever brave the Big Metal Tin Can in the sky for however many hours it takes to get from England to the States, I am insisting on a tour of your place and I will not take no for an answer! It sounds AMAZINGLY DIVINE! Plus you have Amish and an old cemetary nearby. I could photograph old graves for days, and I've always wanted to wave at the Amish. Okay, that's decided. I'm coming to stay. No invitation necessary, no need to put one in the post ...
;D
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And I'm coming with Poppy...(I also love old cemetarys)! Don't worry, we won't take up too much room. Unless BB, MM, Munch, BW and all the rest decide to come too! :rofl;
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yall are funny :laugh:
we have had many peeps ask to purchase the place. we got it for 12K, seriously. i love being there. it has a great history. you would be most welcome!
i have a ton of good pics of Amish, not their faces, and from distance, but they let me stand by road and take them. i love going to visit and playing with the little ones. girls in tiny bonnets and boys pulling little wagons.
one afternoon few years ago, when we lived there, we had a big plastic walmart pool in the back. one of the dads came by on errands with his little ones. i sent him on to errand and kept the kids at my place and they all jumped in pool with their clothes on. LOL we had a blast.
i think sometimes if we'd just stayed there and used the extra money that we've spent here, to do some updates there, we'd been better off.
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It sounds so wonderful, Noob. We also have Amish around here and they are lovely hard working folks.
Well, get that welcome mat out and ready...you'll likely have quite a troop of us one day show up!
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LOL cookout at the Grange!!!!!
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awww thanks for the invite ;D Man, my heart would warm the whole place in the dead of winter...hehehe It sounds wonderful and i couldnt be happier that it is all working out for you. Lovely :flower;
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well as all of you know, tough circumstances warrant tough decisions. i feel grateful we have this option. many don't. :cuddle; :grouphug;
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I am so very glad you made that decision to relocate - as I was reading through your posts from the beginning, I felt overwhelmingly frustrated that you were being subjected to what seemed to be manipulation of the most horrible sort!
The new home you describe sounds utterly idyllic - it is really difficult for me to imagine, as we have no such terrain here in South Africa that i am aware of. Would love to see the photos! Is good to think of you both there, in safe surrounds where you feel able to manage and retain a degree of control of the complexities around you!
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Yes, the new/old place sounds fab to me, too!