happyscooter
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Post by happyscooter on Mar 8, 2011 12:03:49 GMT -5
Whatever he decides, please consider getting Hospice involved. Even if he stays home and doesn't go to the Hospice house, they will help with meds and cost, filing insurance, write up a DNR order, help with baths, have a volunteer stop by so you can run to the store or make funeral arrangements early, send a chaplain for your DH to talk to, etc...
Sending thoughts your way.
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NancysSummerSip
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Post by NancysSummerSip on Mar 8, 2011 12:14:29 GMT -5
Hugs from a fellow freelancer. Right now, don't stress about your work. Your job right now is your home life and whatever comes next. Happyscooter had the best idea about getting Hospice involved. And despite what many people think, their work is not about end-of-life issues only, thought that is what they are best known for. They help families through critical illnesses of all kinds, and their goal is to meet the needs of the entire family, whether it is food, rent/mortgage, medications, utilities, or whatever. The VNA (Visiting Nurses Assocation) can also help, if you have a chapter nearby. The National Kidney Foundation has a guide that also deals with this subject, and it includes information on what to expect, and what to know and ask the doctors: www.kidney.org/atoz/atozTopic_Dialysis.cfm
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Gardening Grandma
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Post by Gardening Grandma on Mar 8, 2011 12:20:10 GMT -5
OP, <<<hugs>>> and . One question: How old are your children? If they are minors, they may be eligible for SS benefits should the worst happen. Second happyscooter's suggestion of hospice. And I do hope you have a support network (family, friends)??
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Mar 8, 2011 12:22:42 GMT -5
Do you work in the states for a company of 50 or more people? If you do discuss with employee services/HR/whoever handles this stuff using your FMLA leave. Some places want you to use it at once and some will allow you to use it on a day by day basis. It will be unpaid leave unless you have vacation/sick, but it's a good idea to get the paperwork in place so you can know your job is protected while you care for your husband and kids.
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kgb18
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Post by kgb18 on Mar 8, 2011 12:22:51 GMT -5
shasta, I'm so sorry your family is going through this. I'm sending hugs and prayers your way.
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cronewitch
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Post by cronewitch on Mar 8, 2011 12:34:39 GMT -5
Sorry you have so much to deal with and wish you all the best.
Since your children are nearly grown talk to them about finances and allow them to help if they wish. After your DH and their dad is gone you will all need some time to grieve but you may all need to cut that short and take jobs, any jobs. If the three of you work you can stretch your savings longer so have more time to adjust the budget. You might need to get rid of the house and live in a small apartment but you will be ok and will make a new normal.
Take it one day at a time and get some rest when you can.
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Post by kadee on Mar 8, 2011 14:32:45 GMT -5
I am sorry for your situation! Having been thru something similar to this with my first hubby, may I make a couple of suggestions??? Talk to the financial dept of the hospital. You may not need to pay. Talk to your choice of funeral director, there are cheaper ways than the "normal" funeral arrangements including getting donations instead of flower tributes. And as some others have suggested, contact some of the local charities...they may be able to help other with items or food if they can't help with $$.
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AgeOfEnlightenmentSCP
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Post by AgeOfEnlightenmentSCP on Mar 8, 2011 15:07:14 GMT -5
Asked by whom? My prayers are with you.
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NastyWoman
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Post by NastyWoman on Mar 8, 2011 15:27:54 GMT -5
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Jake 48
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Post by Jake 48 on Mar 8, 2011 15:38:36 GMT -5
, prayers and well wishes
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Deleted
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Post by Deleted on Mar 8, 2011 15:47:27 GMT -5
I'm so sorry and wish I could do something to help. My most sincere prayers go out for you and your kids. Please keep us updated...when TGH was in the hospital all those days and weeks, it helped me tremendously to come here and post and read encouraging and supporting posts from my cyber pals.
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daylight
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Post by daylight on Mar 8, 2011 17:26:18 GMT -5
You and your family are in my prayers.
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Post by bobbysgirl on Mar 8, 2011 18:03:41 GMT -5
OP: I just sent you a PM.
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Cookies Galore
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Post by Cookies Galore on Mar 8, 2011 19:50:37 GMT -5
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Post by aries7 on Mar 8, 2011 21:02:06 GMT -5
Please know I am praying for and your entire family. I also would suggest using hospice if possible. They helped us when my Dad and Grandma died and they were the kindest, most helpful bunch of people during a very tough time.
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Post by mtshastawriter on Mar 9, 2011 9:31:00 GMT -5
Nancy - thanks for the link to the article. I love the AKF as they are one of the only organizations who seem to actually have something to offer families in need of assistance.
My housing situation is a bit different than most people. When DH became disabled we moved to a LCOL area at my insistence. Because we can't save any money, because of the stupid Medicaid rules, and DH's income was too low to be the 2nd paycheck to live in the SF Bay Area (it didn't even pay our mortgage there....) we moved to where I want to retire.
We bought a double-wide, very nice, mobile home on 5 acres. Due to having been through a lawsuit over our water, which is a whole other story, my father now holds my mortgage. I have 3 more years of $500 a month payments and my property will be paid off. This will bring my housing down to less than $200 a month for taxes/insurance.
My thinking has always been that I wanted to come out of this caregiver stage of my life with a paid-off or nearly paid-off home. This allows me to get a job locally, even if it has to be somewhere like WalMart, or to freelance, because I won't have a large housing expense.
If I need to not pay my mortgage for a couple months, my father would let me. So, I don't have foreclosure or late fee type issues when it comes to my property. Which is very nice....
I went to the hospital yesterday and we changed to a new doctor who I like and respect more. He agreed that it was a bit soon to talk about withholding dialysis, but said that DH's prognosis for a positive outcome is likely very poor. He agreed that we should continue his treatment for a couple days just to see if the infection continues to get worse.
DH has been on strong antibiotics since last Wednesday and so far they are not helping with the MRSA in his bloodstream. Each day his white cell count has climbed. If this trend continues, and it sounds like it is expected to, then he will likely die from the infection and stopping dialysis is about ending and not prolonging his suffering. And, I do believe he is suffering.
My in-laws are coming up today. They are in the "do everything you can, as long as you can" camp, so it makes it a bit hard to have a logical conversation with them. My hope is that they will see what I saw yesterday, that DH is really struggling to breathe and is in a lot of pain, and will come over to my side of the argument that prolonging his life (for us) isn't okay.
This looks to be another long day as my kids requested to go see their father. He has a DNR order already, and the doc seemed to think that he may suffer respiratory or heart failure, so I left it up to my kids if they want to go to the hospital or not. One wants to and the other isn't sure. I told him that he can go to the hospital with us but he doesn't have to go in the room if he can't. And, I told him that his father would understand and not think badly of him.
I guess the silver lining in all of this is that my kids agree with me that we should not let DH suffer needlessly. He has been very ill, for all of their lives, and they knew that this day would arrive. It's hard to have it here, but they understand and are very much for stopping dialysis if the infection does not improve in the next couple days.
I did talk to a hospice social worker yesterday about options. I am not willing/able to care for him here so that he can die at home. I think that would be too overwhelming for my kids to have to watch 24/7 and in talking with the kids both said that they did not want that at all. That was helpful to me and gave me the extra guts to tell my in-laws that I will not do it.
Anyway, thanks for listening. It's good to be able to "talk" about this stuff with people who aren't emotionally involved in the situation.
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Post by bobbysgirl on Mar 9, 2011 9:43:05 GMT -5
Oh MYSHASTA my heart is breaking for you. I'm so sorry you and your boys are going through this. Since you asked for prayers, I put you on our prayer list. Lots of ladies praying for your family. Stay safe and God bless you.
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busymom
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Post by busymom on Mar 9, 2011 9:46:39 GMT -5
You've got great kids! Continuing to send prayers your way!
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NancysSummerSip
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Post by NancysSummerSip on Mar 9, 2011 9:56:20 GMT -5
Mt shasta, you mentioned you are a tech writer; reach out to the freelance community you write for as well. I don't write in that field, but it does not hurt to let your fellow writers know what's going on.
I am heartbroken for you and the kids, reading your last post.
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mercee
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Post by mercee on Mar 9, 2011 10:38:48 GMT -5
**hugs & prayers to you & your family**
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Post by isabella on Mar 9, 2011 10:50:32 GMT -5
mtshasta I continue to hold you and family close in thought and prayers
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april47
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Post by april47 on Mar 9, 2011 10:55:48 GMT -5
It's been 7 years but I still remember my husband's "decision'. He had cancer but basically the cancer was bleeding and he was getting 4 units of blood every day at that point. He said no more blood and he lasted 4 days after that. He was only sick 4 months and healthy as a horse till that point. I am saying this because the greatest gift my husband gave me those last few days was to tell his family this was his own decision and let them know he had decided to be cremated and no funeral. I say it's a gift because I did not want HIS family to think that these were my decisions and not his. Sounds dumb I guess but if your husband decides to stop dialysis, you don't need his family in the mix making you even more miserable. Please accept my prayers and good wishes.
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kimber45
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Post by kimber45 on Mar 9, 2011 10:59:44 GMT -5
Shasta: I am so sorry you and your family is going through this. You will be in my thoughts and prayers.
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lurkyloo
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Post by lurkyloo on Mar 9, 2011 11:32:27 GMT -5
Mtshasta: I am so very sorry. Wishing and hoping for a miracle down here, but glad you have the strength and clarity to do what you and your DH want, and not be bullied (by doctors *or* relatives!) into doing otherwise. It's incredibly hard to be a caregiver, and I really admire your strength of character, and marvel at the personal sacrifices you've made. You're doing great to recognize your boys are adults or nearly-so enough to make their own decisions as well. Thinking of you.
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Deleted
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Post by Deleted on Mar 9, 2011 11:56:40 GMT -5
mtshasta - praying for strength for you and your children right now and peace for your husband.
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jitterbug
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Post by jitterbug on Mar 9, 2011 12:58:54 GMT -5
I am so very sorry that you are dealing with this. I don't want to be morbid, but I am a widow and belong to another great message board that you might find helpful NOW. There is bound to be someone on that message board who's been in your exact same situation - and can maybe give you some helpful advice. Besides the liklihood of someone there having lost their spouse to kidney disease...there are many who are also in your financial prediciment. I would post this message on that bulletin board, too, and see what responses you get. It's www.widownet.org/wnbb3/ It is an extremely safe message board - no spam, no ads. But I would advise that you create a user name that doesn't readily identify you, as I have shared this message board with lots of people because it's so great, but I still want to protect my identity too, so I'm not wearing my heart out where people I know can see it.
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Deleted
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Post by Deleted on Mar 9, 2011 15:46:25 GMT -5
Oh my gosh, I'm so sorry...all my prayers are with you and your family.
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973beachbum
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Post by 973beachbum on Mar 9, 2011 16:18:04 GMT -5
I am so sorry! Please come here and post to us if it will give you any comfort. My father died of a kidney disease when I was in HS. You post brought up a lot of memories.
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daylight
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Post by daylight on Mar 9, 2011 16:31:16 GMT -5
I read your update and I am glad that your children handle the situation as well as it could be expected. That alone, and their understanding of the whole situation probably makes things a little easier.
Prayers ongoing.
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DVM gone riding
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Post by DVM gone riding on Mar 9, 2011 16:46:15 GMT -5
with your husband no longer needing your full attention and care will you be able to get a full time job to make the bills?
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