Support group for non-traditional caregivers?
August 9, 2017 1:59 AM Subscribe
Hello metafilter, you've helped me in the past and I hope you can help me now. I'm a early-50's husband and father of two school-age children, and my wife is suffering from a series of chronic, debilitating medical issues that severely limit her daily activities ...
My question is, do you know of some on-line support community for fathers/husbands like me, who are dealing not only with caring for the sick spouse, but also with raising two children and working full time and maintaining the home and so on? While I find that I'm physically (mostly) able to handle things, I recognize that emotionally I'm not at all prepared for my new role. Compound this with a drastically shortened life expectancy for my wife (she's got, on average, another 5-8 years of life), and I'm at a loss for how best to handle things. Oh, and compound that with my wife's stubborn insistence that we not tell anyone about this (because she doesn't want people to feel sorry for her), so I can't reach out to local friends and family for support without breaking my wife's trust.
Most of the online support groups I've found are directed towards older caregivers or towards those taking care of older family members. I haven't found anything that speaks to my situation, of how to cope with raising young children and caring for a sick spouse at the same time.
My question is, do you know of some on-line support community for fathers/husbands like me, who are dealing not only with caring for the sick spouse, but also with raising two children and working full time and maintaining the home and so on? While I find that I'm physically (mostly) able to handle things, I recognize that emotionally I'm not at all prepared for my new role. Compound this with a drastically shortened life expectancy for my wife (she's got, on average, another 5-8 years of life), and I'm at a loss for how best to handle things. Oh, and compound that with my wife's stubborn insistence that we not tell anyone about this (because she doesn't want people to feel sorry for her), so I can't reach out to local friends and family for support without breaking my wife's trust.
Most of the online support groups I've found are directed towards older caregivers or towards those taking care of older family members. I haven't found anything that speaks to my situation, of how to cope with raising young children and caring for a sick spouse at the same time.
Oh, and compound that with my wife's stubborn insistence that we not tell anyone about this (because she doesn't want people to feel sorry for her), so I can't reach out to local friends and family for support without breaking my wife's trust.
That is not kosher. It is her disease but she is not in this alone, and you cannot be expected to provide support without getting support yourself.
posted by DarlingBri at 2:34 AM on August 9, 2017 [37 favorites]
That is not kosher. It is her disease but she is not in this alone, and you cannot be expected to provide support without getting support yourself.
posted by DarlingBri at 2:34 AM on August 9, 2017 [37 favorites]
I wonder if she's very recently been diagnosed and is just now in the first stage of processing the impact of her diagnosis and what it will mean to leave her children (and you, and the world) before her time. If this is a new diagnosis, like within the last month, perhaps she is just trying to absorb it herself before telling anyone. If this is the case, you might gently discuss a timeline for disclosure. Maybe you can start with telling a few trusted people and asking them not to tell anyone just yet. Kind of like how some people handle telling about a pregnancy, in a happier but still anxious time of life. Because of course, as others have said above, you really can't carry this emotionally alone, even if you find an online support group. You simply can't. That's part of what it means to be going through this together, which you are doing by caring for her and your family and your home. So perhaps she might be OK if you start by telling a few trusted people for your own support and then working out gently together how to widen who you tell.
School age children are also going to need to be able to understand what's happening in their family and to discuss it with whomever they need to discuss it with. Even if you don't choose to tell them the full extent of things, like her life expectancy, they know something is wrong with mom and that their dad is caring for her. Secrecy around this is not in their interest. It generates fear and shame. Perhaps your wife can understand this through the experience of the kids more easily.
None of this rules out a formal support group as well, of course.
This is really difficult and you sound like a very good husband. You deserve and need support and empathy.
posted by flourpot at 2:49 AM on August 9, 2017 [14 favorites]
School age children are also going to need to be able to understand what's happening in their family and to discuss it with whomever they need to discuss it with. Even if you don't choose to tell them the full extent of things, like her life expectancy, they know something is wrong with mom and that their dad is caring for her. Secrecy around this is not in their interest. It generates fear and shame. Perhaps your wife can understand this through the experience of the kids more easily.
None of this rules out a formal support group as well, of course.
This is really difficult and you sound like a very good husband. You deserve and need support and empathy.
posted by flourpot at 2:49 AM on August 9, 2017 [14 favorites]
I would ask in the traditional forums if people there know of something like what you're looking for. I've been a nontraditional caregiver as well and the best way I found support was by starting with the regular groups/forums and asking around. There's often someone there who will know about the obscure Internet forum you actually need, or the local group that meets on every third Tuesday but doesn't advertise so you only find out about them through word of mouth.
posted by Stacey at 3:30 AM on August 9, 2017 [3 favorites]
posted by Stacey at 3:30 AM on August 9, 2017 [3 favorites]
When I had a threatening (but in the end not as serious as we'd feared, although it did end up with a surgery) illness, my husband was very keen for us not to talk about it to anyone as he didn't want people knowing our business. I did tell some people, and we got so much support; also I was able to help other people open up about issues they had that I could support them on (not in a huge draining way, just a me-too way) which helped me deal with being in the situation, and I didn't have to lean on my husband for everything. Also friends then took the pressure off of him by taking me out for walks in my recovery, keeping an eye on me so he could go back to work, being a kind of crisis line in case I needed something doing when he was at work, and that really helped both of us. Just some anecdata points about sharing things - looking back, i twas the best thing to do.
Oh, also, it becomes obvious there's something wrong and people (the kids, others around you) will very easily assume the absolute worst. By being honest and open about it, you can mitigate that and any feeling that people are talking about you.
I realise our situations are different but it was a bit scary there for a while and this might help. I wish you well in getting the support you need.
posted by LyzzyBee at 3:31 AM on August 9, 2017 [4 favorites]
Oh, also, it becomes obvious there's something wrong and people (the kids, others around you) will very easily assume the absolute worst. By being honest and open about it, you can mitigate that and any feeling that people are talking about you.
I realise our situations are different but it was a bit scary there for a while and this might help. I wish you well in getting the support you need.
posted by LyzzyBee at 3:31 AM on August 9, 2017 [4 favorites]
I hope your wife and you are getting some therapy to help cope with this. Is there a support group for people with her diagnosis? If so, they probably have spouses, too, and you may be able to reach out to them. A hospital social worker may know of local resources.
posted by theora55 at 6:03 AM on August 9, 2017 [3 favorites]
posted by theora55 at 6:03 AM on August 9, 2017 [3 favorites]
if you tell us the name of the illness we might be able to help you search; sometimes there are malady-specific support forums.
And like everyone else, I'm hoping that your wife's reflex towards secrecy is part of her first reaction to the news; it's an understandable reaction, but it's not a reasonable plan. Long term it is not sustainable at all and someone is going to have to help her let go of that. You can't do this alone.
So terribly sorry that your family is going through this.
posted by fingersandtoes at 6:21 AM on August 9, 2017 [2 favorites]
And like everyone else, I'm hoping that your wife's reflex towards secrecy is part of her first reaction to the news; it's an understandable reaction, but it's not a reasonable plan. Long term it is not sustainable at all and someone is going to have to help her let go of that. You can't do this alone.
So terribly sorry that your family is going through this.
posted by fingersandtoes at 6:21 AM on August 9, 2017 [2 favorites]
[Her wish for secrecy is] an understandable reaction, but it's not a reasonable plan. Long term it is not sustainable at all and someone is going to have to help her let go of that. You can't do this alone.
Does she realize the incredible degree of pressure this puts on you? In addition to all the other pressure you are under as the sole person taking care of things?? I would never call her selfish, or frame it like that... but damn. How much is one person expected to be able to take?
posted by I_Love_Bananas at 7:29 AM on August 9, 2017 [4 favorites]
Does she realize the incredible degree of pressure this puts on you? In addition to all the other pressure you are under as the sole person taking care of things?? I would never call her selfish, or frame it like that... but damn. How much is one person expected to be able to take?
posted by I_Love_Bananas at 7:29 AM on August 9, 2017 [4 favorites]
So hi. I have a disabling illness that requires intensive medical treatments and comes with a shortened life expectancy, often less than five years, though many of us make it much longer.
Telling people about this is nothing like what she's expecting. Some people feel
sorry for you, sure, but most people are really helpful and gently supportive. And some friends simply disappear. And that's ok, too. I was a nervous wreck when I first started telling people -- shaking hands, a rash trailing up my neck -- but it got easier.
My friends who are the most helpful are often dealing with illnesses or troubles of their own. We talk about them together sometimes, and we also talk about normal things. It's deepened our friendships and made them more meaningful to me. Telling people didn't make everything all about me.
I think being the caregiving spouse is in some ways harder than having the illness, due to the uncertainty. My father had the same hereditary illness I have now and he lived into his 60s, but when I was a kid my folks were really calm and realistic about including us, sharing information as we were ready for it and involving us as much as we wanted.
If this is a new diagnosis, I understand the hesitation about sharing. But as soon as you do, it's like an enormous weight's been lifted, and it makes it easier to accept the situation and navigate it accordingly.
Sending you good thoughts... Please feel free to memail me if I can help.
posted by mochapickle at 8:57 AM on August 9, 2017 [5 favorites]
Telling people about this is nothing like what she's expecting. Some people feel
sorry for you, sure, but most people are really helpful and gently supportive. And some friends simply disappear. And that's ok, too. I was a nervous wreck when I first started telling people -- shaking hands, a rash trailing up my neck -- but it got easier.
My friends who are the most helpful are often dealing with illnesses or troubles of their own. We talk about them together sometimes, and we also talk about normal things. It's deepened our friendships and made them more meaningful to me. Telling people didn't make everything all about me.
I think being the caregiving spouse is in some ways harder than having the illness, due to the uncertainty. My father had the same hereditary illness I have now and he lived into his 60s, but when I was a kid my folks were really calm and realistic about including us, sharing information as we were ready for it and involving us as much as we wanted.
If this is a new diagnosis, I understand the hesitation about sharing. But as soon as you do, it's like an enormous weight's been lifted, and it makes it easier to accept the situation and navigate it accordingly.
Sending you good thoughts... Please feel free to memail me if I can help.
posted by mochapickle at 8:57 AM on August 9, 2017 [5 favorites]
You need your family and your friends at this time.
Explain to your wife the practical benefits. The kids auntie or grandma will surely take them for an overnight a month to allow you personal time. If you need money for house cleaners or yard maintenance you can get financial support. The moms at school can arrange carpool so you can take your wife to medical appointments, or maybe her family can take her so you can go to work. If you have a church community maybe they can bring meals sometimes. Your boss can help with flex leave or work from home arrangements. And so on and so forth.
You cannot do this all on your own, it's too many tasks. Good luck.
posted by crazycanuck at 9:33 AM on August 9, 2017 [1 favorite]
Explain to your wife the practical benefits. The kids auntie or grandma will surely take them for an overnight a month to allow you personal time. If you need money for house cleaners or yard maintenance you can get financial support. The moms at school can arrange carpool so you can take your wife to medical appointments, or maybe her family can take her so you can go to work. If you have a church community maybe they can bring meals sometimes. Your boss can help with flex leave or work from home arrangements. And so on and so forth.
You cannot do this all on your own, it's too many tasks. Good luck.
posted by crazycanuck at 9:33 AM on August 9, 2017 [1 favorite]
I am listening to the answers very carefully as I'm in a pretty similar boat (50, partner recently diagnosed with MS and unable to work again nor do anything much physically, my son from previous marriage and her foster son both with a lot of needs, our 2yo with cystic fibrosis and another one on the way). I'm fortunate in that she is not trying to keep her diagnosis secret, but otherwise I feel your pain trying to provide all the income and do 24 hour support as well as raise kids alone. One solution is to hire a nanny, but the cheapest nanny we can find costs pretty much the same as the salary I can pull down working from home what hours a week I can. Result: savings getting eaten up without much potential for change in the near future. However, operating without a nanny results in me burning out very quickly indeed, and so she's more of a sanity creator than a childminder. All our family members are 12,000 miles away and busy with their own lives, and we have little to no time for keeping up with friends. I earn just enough to be unable to access any benefits of any type, other than $45 a fortnight for our son's "disability". Whoop-de-doo. Because we are partners it is assumed that I will be caring for her full-time unpaid, and that one or both of us will be caring for the children full-time unpaid. The system has difficulty coping with situations like this.
I agree that there are very few resources for you visible online. There are a number of MS groups and other related forums (including those for carers or with caregiver sections), but on the whole they get very few posts on them. I don't know whether there are simply very few others out there with a similar issue, or whether they're all busy on a forum I haven't found yet. If you come across something please shout out. Those forums that do have action are generally people caring for elderly parents and they have very different issues (and almost always don't have young children needing full-time care too).
If you ever want to have a vent to someone who understands your position, feel free to MeMail me.
Sending my best wishes and crossing my fingers you can keep your sanity for your family's sake...
posted by tillsbury at 12:41 AM on August 10, 2017 [1 favorite]
I agree that there are very few resources for you visible online. There are a number of MS groups and other related forums (including those for carers or with caregiver sections), but on the whole they get very few posts on them. I don't know whether there are simply very few others out there with a similar issue, or whether they're all busy on a forum I haven't found yet. If you come across something please shout out. Those forums that do have action are generally people caring for elderly parents and they have very different issues (and almost always don't have young children needing full-time care too).
If you ever want to have a vent to someone who understands your position, feel free to MeMail me.
Sending my best wishes and crossing my fingers you can keep your sanity for your family's sake...
posted by tillsbury at 12:41 AM on August 10, 2017 [1 favorite]
Hi, I'm the OP. I asked my question anonymously (as explained above) but this issue is important enough for me to just go ahead and create a sock account so that I can have a bit of a presence here, yet still respect my wife's request for privacy.
I can say a bit more about my situation. My brave and beautiful wife has had diabetes for decades, and she and I are both in our early 50's. We had children late in life; one is in middle school, the other in grade school. My wife has been through a number of health crises over the last few years, some treatable and others simply manageable. Her ability to do basic functions (like climb stairs, or pick up items from the floor) has been steadily decreasing over that time. My cri de coeur was motivated by her being diagnosed (just a few days ago) with kidney disease. We're still seeing doctors, getting follow-up lab tests, and so on, and so things are still in flux. The big concern, though, is her having to go on dialysis... if that happens (and it hasn't happened yet!) she's looking at 5 years or so of life expectancy, barring some miracle (like a kidney transplant).
flourpot, you are quite right in your guess that this is a recent diagnosis. As you surmised, she and I are still in the middle of trying to process this.
And me? I'm swinging between outright denial and panicked Stoicism, if that makes sense. When the wife I love is breaking down in tears each night, begging the Lord to just let her live long enough to get her children through high school, I can do little more than hug her and try to keep her calm.
I appreciate everyone's comments that I will need to get help, privacy be dammed. Once the dust settles on this diagnosis, I'll have a good talk with her about how I'll be needing help so that I can do my job of helping her and the kids.
I thank you for your advice. I'll be contacting some of you via MeMail to vent (thanks for the offers!) once I have some more time. My heartfelt sympathy for my fellow travelers who are also enduring this journey on a path we would not willingly choose. My heart breaks for all of us.
posted by fuzzy.little.sock at 12:25 PM on August 10, 2017
I can say a bit more about my situation. My brave and beautiful wife has had diabetes for decades, and she and I are both in our early 50's. We had children late in life; one is in middle school, the other in grade school. My wife has been through a number of health crises over the last few years, some treatable and others simply manageable. Her ability to do basic functions (like climb stairs, or pick up items from the floor) has been steadily decreasing over that time. My cri de coeur was motivated by her being diagnosed (just a few days ago) with kidney disease. We're still seeing doctors, getting follow-up lab tests, and so on, and so things are still in flux. The big concern, though, is her having to go on dialysis... if that happens (and it hasn't happened yet!) she's looking at 5 years or so of life expectancy, barring some miracle (like a kidney transplant).
flourpot, you are quite right in your guess that this is a recent diagnosis. As you surmised, she and I are still in the middle of trying to process this.
And me? I'm swinging between outright denial and panicked Stoicism, if that makes sense. When the wife I love is breaking down in tears each night, begging the Lord to just let her live long enough to get her children through high school, I can do little more than hug her and try to keep her calm.
I appreciate everyone's comments that I will need to get help, privacy be dammed. Once the dust settles on this diagnosis, I'll have a good talk with her about how I'll be needing help so that I can do my job of helping her and the kids.
I thank you for your advice. I'll be contacting some of you via MeMail to vent (thanks for the offers!) once I have some more time. My heartfelt sympathy for my fellow travelers who are also enduring this journey on a path we would not willingly choose. My heart breaks for all of us.
posted by fuzzy.little.sock at 12:25 PM on August 10, 2017
Good plan to make a sock account.
For what it's worth, my advice is that you need to make this public sooner rather than later. Not necessarily completely public (I wouldn't be posting on Facebook or whatever), but telling family and others who need to know. It will lighten your load because you don't have to hide anything, and lightening your load is going to be the first priority for everyone if you're going to be useful to your family. You may find that some help comes out of the woodwork -- sometimes from the most unexpected places.
You need to do your research and possibly do it on your wife's behalf. With my partner she wisely chose to avoid googling entirely and left it down to me to research and filter real data from the sea of rubbish. The last thing a newly diagnosed chronic patient needs is a pile of horror stories to read.
One thing that helped me was to re-frame my job description. Once I'd got used to being the caregiver it was easy to approach it like any other. If I'm going to do this job then I'm going to do it like a boss. The actual individual elements of the job are all very easy, so it just comes down to planning and preparation to make sure everything gets done at the right time and in the right order.
You should also review your insurance cover, I'd suggest. Although I don't tend to get ill it is a bit of a nightmare with our current situation even if I just get a bit of a cold, and anything happening to me would change things dramatically. A significant amount of trauma cover is stupendously expensive but we figured we need to have it in place in case I get a diagnosis of something grim too.
Emotional support is hard to find, though. We did get six hours of subsidised counselling from the local society dealing with this disease, which was better than nothing even though the majority of the responses came down to "blimey that all sounds a bit hard".
Every now and then on different quiet forums I come across messages from people in a similar position. They usually sound horribly desperate, and they are usually posted from accounts where that is the only posting (and of course there are no responses to the threads many years later). I often wonder what these people have been up to in the intervening years and whether they're still ok.
posted by tillsbury at 1:23 PM on August 10, 2017 [1 favorite]
For what it's worth, my advice is that you need to make this public sooner rather than later. Not necessarily completely public (I wouldn't be posting on Facebook or whatever), but telling family and others who need to know. It will lighten your load because you don't have to hide anything, and lightening your load is going to be the first priority for everyone if you're going to be useful to your family. You may find that some help comes out of the woodwork -- sometimes from the most unexpected places.
You need to do your research and possibly do it on your wife's behalf. With my partner she wisely chose to avoid googling entirely and left it down to me to research and filter real data from the sea of rubbish. The last thing a newly diagnosed chronic patient needs is a pile of horror stories to read.
One thing that helped me was to re-frame my job description. Once I'd got used to being the caregiver it was easy to approach it like any other. If I'm going to do this job then I'm going to do it like a boss. The actual individual elements of the job are all very easy, so it just comes down to planning and preparation to make sure everything gets done at the right time and in the right order.
You should also review your insurance cover, I'd suggest. Although I don't tend to get ill it is a bit of a nightmare with our current situation even if I just get a bit of a cold, and anything happening to me would change things dramatically. A significant amount of trauma cover is stupendously expensive but we figured we need to have it in place in case I get a diagnosis of something grim too.
Emotional support is hard to find, though. We did get six hours of subsidised counselling from the local society dealing with this disease, which was better than nothing even though the majority of the responses came down to "blimey that all sounds a bit hard".
Every now and then on different quiet forums I come across messages from people in a similar position. They usually sound horribly desperate, and they are usually posted from accounts where that is the only posting (and of course there are no responses to the threads many years later). I often wonder what these people have been up to in the intervening years and whether they're still ok.
posted by tillsbury at 1:23 PM on August 10, 2017 [1 favorite]
Hi, I am so sorry for your and your wife's health situation. I don't have much practical help regarding receiving support and your wife's reluctance to allow others to know of her issues, but I wonder if you and she have considered transplantation? I worked for many years with a liver and kidney/pancreas transplantation program, and it is, indeed, possible to have both kidney and pancreas transplantation. In fact, it is typically only considered when diabetes affects the kidneys enough that dialysis is needed because of diabetes. Transplantation programs prefer to transplant both organs together for a number of reasons. I would urge you and your wife to ask about this, and to insist on a referral to at least one academic medical center for an evaluation. And if the first center denies listing because of something you think is bogus, go to another one. Each transplantation center has its own rules. One might allow, for instance, medical marijuana use, while for another it is verboten. You can even be listed at more than one center, if you have the energy and money for traveling to different areas, for instance the Central Atlantic and Southern Atlantic catchment areas. Some have lists that are very competitive for receiving organs, and others are less competitive. There is all sorts of minutiae in this sphere, so learning a bit from an advocacy group can be very empowering. I know nothing about your location or whether this is something she considered, but I know what a lifesaving thing k/p transplantation can be. No more diabetes! No more kidney disease! Of course, transplantation has its own complications and risks, but for the diabetic patients I know who had this (in exactly your wife's situation), the procedure was absolutely life-changing.
Also, transplantation programs all have social workers and family support groups. They are experts in knowing about programs that can help you financially and with family care and transportation issues. You would no longer be alone. Best of luck to you and your family!
posted by citygirl at 3:13 PM on August 10, 2017 [1 favorite]
Also, transplantation programs all have social workers and family support groups. They are experts in knowing about programs that can help you financially and with family care and transportation issues. You would no longer be alone. Best of luck to you and your family!
posted by citygirl at 3:13 PM on August 10, 2017 [1 favorite]
Dear citygirl, that is very helpful advice. It's good to know that those resources are out there!
posted by fuzzy.little.sock at 7:03 PM on August 10, 2017
posted by fuzzy.little.sock at 7:03 PM on August 10, 2017
Hello everyone. Me again. Looks like my wife will go on dialysis. I ... I will use this as a lifeline. Thank you to those who have already reached out to me. My heart breaks for us all.
I will try to update when I can. Just trying to keep it together, keep it together, keep it together, keep it together. Be strong, everyone. Be strong. Be kind.
posted by fuzzy.little.sock at 7:19 AM on September 20, 2017 [1 favorite]
I will try to update when I can. Just trying to keep it together, keep it together, keep it together, keep it together. Be strong, everyone. Be strong. Be kind.
posted by fuzzy.little.sock at 7:19 AM on September 20, 2017 [1 favorite]
A bit more. You're right, the right thing to do is to reach out. We've started to tell a few people, and it's starting to help. We can not do this alone. I can not do this alone.
I haven't found any on-line support group (other than this one; hello, Metafilter!) so I don't have any advice for my fellow travelers, other than to take the advice so many kind souls have given already on this page: reach out. People are kinder than you know. People will want to help. I've been encouraged by the replies so far from a few friends that we've told. A neighbor offered to care of the kids for a bit (and my kids & their kids are already friends so that's going to work out great).
Love and kindness to us all. No more tears, only strength. Only strength.
posted by fuzzy.little.sock at 6:31 PM on September 20, 2017
I haven't found any on-line support group (other than this one; hello, Metafilter!) so I don't have any advice for my fellow travelers, other than to take the advice so many kind souls have given already on this page: reach out. People are kinder than you know. People will want to help. I've been encouraged by the replies so far from a few friends that we've told. A neighbor offered to care of the kids for a bit (and my kids & their kids are already friends so that's going to work out great).
Love and kindness to us all. No more tears, only strength. Only strength.
posted by fuzzy.little.sock at 6:31 PM on September 20, 2017
I am so sorry to hear that this is your situation. And yet, I am so glad that others in your real life community can give you some of the real life help that you need.
The only thing I will push back on is your mantra to be strong. It is OK for you to be weak. You are losing your wife and losing your life to this illness. It is OK for you to cry, need support, get a counselor, talk it out, etc. If you just push it all down and bottle it up you are at risk of eating or drinking your feelings, which is not what you want.
As long as you are all getting out of bed and getting where you need to be in the day you are doing well. Wishing you the best.
posted by crazycanuck at 9:48 PM on September 22, 2017 [1 favorite]
The only thing I will push back on is your mantra to be strong. It is OK for you to be weak. You are losing your wife and losing your life to this illness. It is OK for you to cry, need support, get a counselor, talk it out, etc. If you just push it all down and bottle it up you are at risk of eating or drinking your feelings, which is not what you want.
As long as you are all getting out of bed and getting where you need to be in the day you are doing well. Wishing you the best.
posted by crazycanuck at 9:48 PM on September 22, 2017 [1 favorite]
I came back to mention an app called Small Circles (iOS/Android.) It's designed specifically to support caregivers and includes local support groups you can join. I downloaded it at a real low point, when I wasn't really ready or able to talk about things, but I did each out once and received an enormous amount of support.
posted by Room 641-A at 5:17 AM on September 23, 2017 [1 favorite]
posted by Room 641-A at 5:17 AM on September 23, 2017 [1 favorite]
Hello, peeps. It's me, fuzzy.little.sock. Here's an update, for my sake. Dialysis for my wife is a possibility in the future, but the latest is that my wife has been put on the transplant list for new kidneys. Apparently, the "cure" for this kind of kidney disease is... to get a transplant.
I'm not sure how to feel about this. I know bad things happen to people, but I guess I never really thought about it, or maybe I always thought these bad things happen to other people. But I guess that we're just next in line for the bad thing.
So here we are. I'm not crying so much anymore, so there's that, and my wife and I are talking about this with other people, so there's that, too. I guess I have to learn a lot about transplants. Thanks, citygirl, for your advice above.
Hold your dear ones close, everyone. Kiss your child tonight. Hug that kitten. Go do it. Because bad things happen, like lightning from above, like the rain that falls on everyone. Don't miss your chances today to get those moments with your loved ones, because for all of us, the storms are out there, waiting.
Strength to us all.
posted by fuzzy.little.sock at 9:46 AM on October 17, 2017 [2 favorites]
I'm not sure how to feel about this. I know bad things happen to people, but I guess I never really thought about it, or maybe I always thought these bad things happen to other people. But I guess that we're just next in line for the bad thing.
So here we are. I'm not crying so much anymore, so there's that, and my wife and I are talking about this with other people, so there's that, too. I guess I have to learn a lot about transplants. Thanks, citygirl, for your advice above.
Hold your dear ones close, everyone. Kiss your child tonight. Hug that kitten. Go do it. Because bad things happen, like lightning from above, like the rain that falls on everyone. Don't miss your chances today to get those moments with your loved ones, because for all of us, the storms are out there, waiting.
Strength to us all.
posted by fuzzy.little.sock at 9:46 AM on October 17, 2017 [2 favorites]
Hello, little peeps. Rough day today. I can't believe it's been three months since my first post. Three months!
Someday, there will be someone like me who will stumble across this post and will wonder if things get better. Nah, I'm here to tell you things don't always get better, but that you'll be surprised at what kind of things you can do. You'll do it, just like I do it, because that's who you are.
When I said "in sickness and in health," I fucking meant what I said.
Strength to us all, my little peeps. Strength to us all.
posted by fuzzy.little.sock at 8:25 PM on November 19, 2017 [2 favorites]
Someday, there will be someone like me who will stumble across this post and will wonder if things get better. Nah, I'm here to tell you things don't always get better, but that you'll be surprised at what kind of things you can do. You'll do it, just like I do it, because that's who you are.
When I said "in sickness and in health," I fucking meant what I said.
Strength to us all, my little peeps. Strength to us all.
posted by fuzzy.little.sock at 8:25 PM on November 19, 2017 [2 favorites]
My dear internet strangers,
It has not been easy. Things did not get better. When I said last year in October that bad things happen, I didn't know then just how bad it would get.
My wife went into complete kidney failure in December, was hospitalized over Christmas, and started dialysis immediately afterwards. And now, four times a day, for a total of about six hours, she has to lock herself into our home office to do her dialysis. She's stable, and she's brave, and she's doing what she needs to do, but her life is a shadow of what it used to be, and I see every day how much she is struggling just to keep going.
But then, just last week, we got some good news. Our blood tests came back and it turns out I am a perfect match, as in identical-twin match. I'll be giving her one of my kidneys this summer. If all goes well, she will be with me to see our children grow up. And me? I have the rare honor to give this kind of gift to my wife. Not many of us get this chance to truly give of ourselves, but I can do this, and I can do it for the woman I've loved for thirty years, and I can save her life.
And so, in this darkness, I get to be the light.
posted by fuzzy.little.sock at 3:05 PM on March 7, 2018 [4 favorites]
It has not been easy. Things did not get better. When I said last year in October that bad things happen, I didn't know then just how bad it would get.
My wife went into complete kidney failure in December, was hospitalized over Christmas, and started dialysis immediately afterwards. And now, four times a day, for a total of about six hours, she has to lock herself into our home office to do her dialysis. She's stable, and she's brave, and she's doing what she needs to do, but her life is a shadow of what it used to be, and I see every day how much she is struggling just to keep going.
But then, just last week, we got some good news. Our blood tests came back and it turns out I am a perfect match, as in identical-twin match. I'll be giving her one of my kidneys this summer. If all goes well, she will be with me to see our children grow up. And me? I have the rare honor to give this kind of gift to my wife. Not many of us get this chance to truly give of ourselves, but I can do this, and I can do it for the woman I've loved for thirty years, and I can save her life.
And so, in this darkness, I get to be the light.
posted by fuzzy.little.sock at 3:05 PM on March 7, 2018 [4 favorites]
fls, that's pretty much a miracle and it's a true cause for celebration.
I'm so relieved and delighted for you both.
posted by mochapickle at 4:30 PM on March 7, 2018 [1 favorite]
I'm so relieved and delighted for you both.
posted by mochapickle at 4:30 PM on March 7, 2018 [1 favorite]
Dear fuzzy.little.sock,
I am so thrilled to hear that your wife and you are such close matches! She has a much, much better option with a live donor than with a cadaver donor - the brief time lapse between your donation and her receiving your kidney makes a big difference. With a cadaver kidney you never really know the medical history of the donor, and the organ needs to be held for transport and inevitably suffers some damage to its cells. And a cadaver donor means a multi-year wait for a recipient. A live donor, particularly a person so close to the recipient that their love spills over into gifting an actual part of themselves, is a really ideal situation for recipient and surgeon. You will have a period where you will absolutely need to take care of yourself after surgery, so I hope you can get some family help in to keep your kids fed and keep your household running. Your transplant team will fill you in on all the particulars.
Your description of your wife's dialysis leads me to think that she's doing home peritoneal dialysis. This is a much-ignored option (by nephrologists) that is an excellent option for many patients. It's gentler (longer lasting means less dramatic fluid shifts during the dialysis process and also spares the blood vessels from traumatic access for dialysis). I am impressed that her nephrologist suggested it, and that your wife agreed. I wonder, though, if she's heard of the option of overnight dialysis? There are home dialysis machines that will do all the cycling of dialysate while she sleeps, which really frees up her days. Just a suggestion she might consider.
Again, my best wishes and sending love and encouragement your way!
posted by citygirl at 9:43 PM on March 11, 2018 [1 favorite]
I am so thrilled to hear that your wife and you are such close matches! She has a much, much better option with a live donor than with a cadaver donor - the brief time lapse between your donation and her receiving your kidney makes a big difference. With a cadaver kidney you never really know the medical history of the donor, and the organ needs to be held for transport and inevitably suffers some damage to its cells. And a cadaver donor means a multi-year wait for a recipient. A live donor, particularly a person so close to the recipient that their love spills over into gifting an actual part of themselves, is a really ideal situation for recipient and surgeon. You will have a period where you will absolutely need to take care of yourself after surgery, so I hope you can get some family help in to keep your kids fed and keep your household running. Your transplant team will fill you in on all the particulars.
Your description of your wife's dialysis leads me to think that she's doing home peritoneal dialysis. This is a much-ignored option (by nephrologists) that is an excellent option for many patients. It's gentler (longer lasting means less dramatic fluid shifts during the dialysis process and also spares the blood vessels from traumatic access for dialysis). I am impressed that her nephrologist suggested it, and that your wife agreed. I wonder, though, if she's heard of the option of overnight dialysis? There are home dialysis machines that will do all the cycling of dialysate while she sleeps, which really frees up her days. Just a suggestion she might consider.
Again, my best wishes and sending love and encouragement your way!
posted by citygirl at 9:43 PM on March 11, 2018 [1 favorite]
Dear citygirl and mochapickle, thanks so much for your kind words. And citygirl, thank you for writing up that description of home peritoneal dialysis (you're quite correct, that's exactly what she is doing).
If anything good comes out of this, I hope it's that someone in the future, in desperate straits, will stumble upon this askme question and will find some glimmer of hope. It has not been easy, dear future reader. It will not be easy. But it will surprise you just how much strength you have in your self, and just how much support you can find in your friends and family.
And citygirl, it's funny you should also mention the overnight peritoneal dialysis because that's exactly what my wife will be doing, starting next week. It will give her back her days! That's been one of the hardest parts of this; once we went through the oh-my-god and the what-next, once the worst fear actually happened and we came out the other side, once the dialysis became the new normal for us, well, the new normal is that my wife is now just a ghost in the house, constantly having to lock herself away and hook herself up for dialysis. Oh, to have her back, to have her able to sit with the kids and play games and help with homework! The nighttime dialysis will bring her part of the way back to me (she will also still need to do a daytime cycle, but not four times a day). Part of the way back, but only partly; the last final steps are the path that takes my kidney to her body.
I don't give a flying fuck about having to go under a knife. What I really care about, what I really want, is to have my wife back with me, to have her sit next to me at the kitchen table, to have her spend the evening with me on the couch. Those Netflix shows aren't going to watch themselves, y'know?
Dear ones, I would say strength to us all, but we all have the strength within us already. You will find it there when you really need it.
posted by fuzzy.little.sock at 11:36 AM on March 26, 2018 [2 favorites]
If anything good comes out of this, I hope it's that someone in the future, in desperate straits, will stumble upon this askme question and will find some glimmer of hope. It has not been easy, dear future reader. It will not be easy. But it will surprise you just how much strength you have in your self, and just how much support you can find in your friends and family.
And citygirl, it's funny you should also mention the overnight peritoneal dialysis because that's exactly what my wife will be doing, starting next week. It will give her back her days! That's been one of the hardest parts of this; once we went through the oh-my-god and the what-next, once the worst fear actually happened and we came out the other side, once the dialysis became the new normal for us, well, the new normal is that my wife is now just a ghost in the house, constantly having to lock herself away and hook herself up for dialysis. Oh, to have her back, to have her able to sit with the kids and play games and help with homework! The nighttime dialysis will bring her part of the way back to me (she will also still need to do a daytime cycle, but not four times a day). Part of the way back, but only partly; the last final steps are the path that takes my kidney to her body.
I don't give a flying fuck about having to go under a knife. What I really care about, what I really want, is to have my wife back with me, to have her sit next to me at the kitchen table, to have her spend the evening with me on the couch. Those Netflix shows aren't going to watch themselves, y'know?
Dear ones, I would say strength to us all, but we all have the strength within us already. You will find it there when you really need it.
posted by fuzzy.little.sock at 11:36 AM on March 26, 2018 [2 favorites]
Dear fuzzy.little.sock,
Thank you so much for your kind words. I'm so glad to hear that you and your wife are finding a way to work this into your life in a way that will allow her to participate in the rest of her life more easily. From your saying that she needs to have a daytime cycle, too, I am guessing that she is having a lot of fluid build-up, and perhaps doesn't pee much or at all. Fluid restriction just sucks, I know. I remember one surgeon-in-training who assisted with a kidney transplant and was just gushing with the astonishing results of transplantation surgery. She oohed and ahhhed to all of us that the kidney started making urine as soon as the vessels were sutured together and before the surgery was even finished - the urine started flowing like a river into the urine bag, and to her it seemed like a miracle. It was wonderful to see that this future kidney surgeon really loved that it was going to change someone's life!
I'm sure you and the doctors are planning the transplant even while settling into the dialysis process. I thought I'd mention laparoscopic donation, which is much, much easier to recover from. Open procedures aren't all that common anymore, but on the off-chance that your surgeon doesn't perform it, I wanted to let you know that there is an alternative to "open" surgery.
If your surgeon can't perform laparoscopic surgery, it's worth looking for a surgeon who can. Recovery is much, much quicker, which means less dependence on whatever childcare plans you need to make and overall less pain and discomfort. Every transplant case I've ever seen has been laparoscopic for the recipient, but not for every donor, so donation is more of an issue.
Please don't hesitate to run stuff by me. I've worked with several transplant programs (focus on liver, though) so I know that lots of rules and policies presented to patients as written in stone are actually unique to each program. 15 years ago I was with a program where the otherwise wonderful surgeon had not been trained in laparoscopic donor surgery, and we lost some cases to savvy patients who sought out programs where it was offered. Some accepted some insurance but not others. Transplant programs make a lot of profit for hospitals and you and your wife will be willingly seen at rival programs if you feel you are not being well-served.
Also, lean on the nurses and social workers to help with the cost of anti-rejection medications after surgery. They will work really hard to save you money, will try hard to get your wife into patient assistance programs and work with mail order pharmacies that can organize medications for her. And remember that if your/her insurance changes there can be a lot of impact on your/her pharmacy benefits. The nurses and social worker can be your advocates if you are open with them. Keep them up to date on all insurance changes!
posted by citygirl at 2:31 PM on March 27, 2018 [1 favorite]
Thank you so much for your kind words. I'm so glad to hear that you and your wife are finding a way to work this into your life in a way that will allow her to participate in the rest of her life more easily. From your saying that she needs to have a daytime cycle, too, I am guessing that she is having a lot of fluid build-up, and perhaps doesn't pee much or at all. Fluid restriction just sucks, I know. I remember one surgeon-in-training who assisted with a kidney transplant and was just gushing with the astonishing results of transplantation surgery. She oohed and ahhhed to all of us that the kidney started making urine as soon as the vessels were sutured together and before the surgery was even finished - the urine started flowing like a river into the urine bag, and to her it seemed like a miracle. It was wonderful to see that this future kidney surgeon really loved that it was going to change someone's life!
I'm sure you and the doctors are planning the transplant even while settling into the dialysis process. I thought I'd mention laparoscopic donation, which is much, much easier to recover from. Open procedures aren't all that common anymore, but on the off-chance that your surgeon doesn't perform it, I wanted to let you know that there is an alternative to "open" surgery.
If your surgeon can't perform laparoscopic surgery, it's worth looking for a surgeon who can. Recovery is much, much quicker, which means less dependence on whatever childcare plans you need to make and overall less pain and discomfort. Every transplant case I've ever seen has been laparoscopic for the recipient, but not for every donor, so donation is more of an issue.
Please don't hesitate to run stuff by me. I've worked with several transplant programs (focus on liver, though) so I know that lots of rules and policies presented to patients as written in stone are actually unique to each program. 15 years ago I was with a program where the otherwise wonderful surgeon had not been trained in laparoscopic donor surgery, and we lost some cases to savvy patients who sought out programs where it was offered. Some accepted some insurance but not others. Transplant programs make a lot of profit for hospitals and you and your wife will be willingly seen at rival programs if you feel you are not being well-served.
Also, lean on the nurses and social workers to help with the cost of anti-rejection medications after surgery. They will work really hard to save you money, will try hard to get your wife into patient assistance programs and work with mail order pharmacies that can organize medications for her. And remember that if your/her insurance changes there can be a lot of impact on your/her pharmacy benefits. The nurses and social worker can be your advocates if you are open with them. Keep them up to date on all insurance changes!
posted by citygirl at 2:31 PM on March 27, 2018 [1 favorite]
My dear internet friends, here is some news. The situation is not improving, and so our transplant date has been moved up. We have our surgery in ten days. I will see you on the other side.
My thanks to the mods for keeping this discussion open and for letting me continue to post. I know that it goes against the rules of the green, but it means so much to me that I can still write here.
Let me be the light in the darkness. May we all find that light in our own dark times, and may we all give that light to the ones we love. Be strong, be brave, be kind, but most of all, be the person you already know you are, and let that light shine through you.
I will post again, soon.
posted by fuzzy.little.sock at 7:30 PM on May 10, 2018 [2 favorites]
My thanks to the mods for keeping this discussion open and for letting me continue to post. I know that it goes against the rules of the green, but it means so much to me that I can still write here.
Let me be the light in the darkness. May we all find that light in our own dark times, and may we all give that light to the ones we love. Be strong, be brave, be kind, but most of all, be the person you already know you are, and let that light shine through you.
I will post again, soon.
posted by fuzzy.little.sock at 7:30 PM on May 10, 2018 [2 favorites]
your love for your wife is an inspiration. please keep us posted. we're all rooting for your family.
posted by fingersandtoes at 8:37 PM on May 10, 2018
posted by fingersandtoes at 8:37 PM on May 10, 2018
Wishing you and your love every success throughout this process, fls. We'll be thinking of you and hoping for good things for your family.
posted by mochapickle at 9:16 PM on May 10, 2018
posted by mochapickle at 9:16 PM on May 10, 2018
My dear internet friends, I write to you from the other side. Surgery was a success and my kidney started working right away for my wife. We are so grateful that my wife now has a new life, without dialysis. My thanks to all of you for your kind words. May you all find peace and happiness in your own lives, as I have in mine, and may you see the light in your own struggles. It’s a tough world out there, but the love we all have for each other will carry us through.
posted by fuzzy.little.sock at 4:38 AM on May 26, 2018 [5 favorites]
posted by fuzzy.little.sock at 4:38 AM on May 26, 2018 [5 favorites]
That is wonderful news! Thank you for the update!
posted by fingersandtoes at 8:47 AM on May 26, 2018 [1 favorite]
posted by fingersandtoes at 8:47 AM on May 26, 2018 [1 favorite]
This thread is closed to new comments.
You might have good luck finding support through a local hospice. You don't need the hospice services but there are hospice social workers who should be well clued in to the different types of support available locally.
posted by fluffy battle kitten at 2:27 AM on August 9, 2017 [28 favorites]