Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
I was just on the phone, talking to my daughter about what I might do when I get some health back, and was telling her that I think about those who don't have anyone, alone, and slipping between the cracks, giving up, wondering how I might help them once I get some health. Whew, and now you come up with this. I am amazed!
I have to say, I remember when my cousin (many years ago) came down with MS and became very disabled, his nurse wife (and mother of his son) left him. Sigh...... it's heart breaking.
All I can say at this point, is I am praying Norma, and I am so very very sorry. I feel sorry for this woman, who's heart must be so cold.
I've heard of others who went through this too and is is really heartbreaking. then there are those who hang in and do all they can to make the life of the striken one as good as possible. we know a couple where the wife has MS and is losing ability to walk, losing eyesight, she also had breast cancer but they are together and still having fun. she is an inspiration as she fights to stay as well as possible.
I'm sorry for this tragedy on top of the other.
But being fare, there is also a chance that she may not leave him at all. Caring for a sick relative must be very stressing (my mother did it for her mom). Maybe she said that in a stressful moment, maybe she is feeling depressed and did not think or meant what she said. We are all human, and have our moments. Lets wait and see. If she stays, good for your nephew, he has a good woman who loves him by his side. If she leaves, good for your nephew, he would't want a woman who doesn't love him by his side. This may very well be the test of her life.
PKDAD
Love,
Norma...
I am so sorry to hear this has happened. I suspect your nephew is much more aware of what is happening around him than you give him credit for. His brain is still functioning and aware even if he is physically unable to speak, walk or talk. So he hears things and process them, he just can't respond in a standard fashion, which undoubtedly makes it so much more frustrating for him.
My husband and I wrote our own vows and specifically INCLUDED "in sickness and in health". He knew I had PKD from when we had first met 7 years earlier (long story) and wanted to state in front of family and friends, that we truly meant what we said: there were going to be good times and bad, sickness and health and we were going to stand by each other no matter what happened.
I will admit this liver, well, it was unexpected. No one warned me about it (although I knew it had innumberable cysts when I was first diagnosed). It basically "showed up" about 4 years after we were married (I had always thought any discomfort was due to my kidneys--hah!). And for an extended period of time, especially after I retired from the Air Force and my plans of taking a year off and then going back to work or school were not exactly realized (I cannot physically work or attend school), my husband joked that if/when we returned to Florida, where we were married, he was going to return me under the Florida Lemon Law statute! I always knew it was a joke and we always got a laugh out of it. But lo and behold, as we cross into Florida enroute to Mayo Jacksonville for my 2009 dual liver/kidney transplant evaluation, the very first vehicle we saw was a Florida Highway Patrol car! Here was his chance: Lemon Law, law enforcement, the proverbial turn in! Silence. We passed the highway patrol car. Then turned and looked at each other. And start laughing, to the point of tears running down our faces! It couldn't have been scripted any better by the top Hollywood writers! Needless to say, he didn't "turn me in"; he never would. We meant what we said when we were married and we mean it now. He is my rock; he puts together my medication when I'm not feeling well, does the shopping, the cleaning, the chauffering, pushed my wheelchair when I need it. And when my liver hurts he even offers to step on my toes to distract me from the liver! As long as I can still laugh, he knows things will be okay. And when I can't laugh anymore, he'll still be there, just more worried than ever.
I simply cannot imagine anyone walking out at the time of most need. As Helen says, it makes me wonder what kind of foundation the relationship was based on.
It also makes me want to run to a lawyer and get your nephew a legal advocate, someone who will take charge of all his personal business and financial accounts so she can't clean him out, get rid of any of his possessions or sell the house out from underneath him! Please find out about what that will involve. If she is willing to walk out on him right now, she may be so calloused as to take advantage of his disabled state and cash out accounts or leave a minimum balance and leave him virtually penniless and homeless, especially if she holds a durable health care power of attorney and can act and do anything for him if he is disabled. "I didn't sign up for this" implies a person who feels entitled to something and who knows what that entitlement will be. Your nephew needs his OWN advocate--not HER. If it involves a court, it involves a court; to heck with keeping anything quiet or simple. He is in no position to advocate for himself, put a freeze on his accounts and joint accounts or stop her from doing basically anything (especially if she has a durable health care power of attorney, which probably needs to be withdrawn as well so someone else is making decisions for him; chances are he can decide who he wants with a nod of his head or by pointing to a name or the court can appoint someone from his family or an objective third party). Just please get him some protection as soon as possible before he is out on the streets!
This sounds more like the excuse she's been looking for than a moment in time of being overwhelmed. She hasn't had to care for him yet; the hospital and rehab center have done everything! At most she's had to sign some papers and pick a rehab center based on the selections and advice of the physicians and what insurance will cover. Of course it's been an emotional rollercoaster, but it's far too soon to write this off as something she didn't "sign up for". Jeez!
I wish your nephew all the very best. Please do find out about the legal advocate since he can't do that for himself; there must be someone who can act on his behalf and petition the court for him. He needs to be protected from her, whether she leaves or eventually decides to stay (in which case they can change the arrangements once he's bettter or the situation is stable).
Loads of hugs,
Ruth
That's tough!
Just when he needs the most support, she cuts out!
One can only wonder what might happen when (not if...) SHE needs support!
Well, with "friends" like these, who needs enemies.
These days, the word "commitment" doesn't really mean anything.
We live in a disposable, throwaway world.
Does your nephew have other sources of support, (besides you, of course!) ??
You might suggest he join this support group!!!
Peace and Blessings!
CoachRichie
Before we got married, my husband knew all about PKD. I told him how bad it might get. The thing is, when you marry someone, an illness is never a reason to leave them (just like I would never leave my husband because he is required to be away for his job, or because of the health condition his job caused him - do you have any idea how many doctors appointments I go to between him, a newborn, and myself? I swear it's all I do. And if he was in the hospital I wouldn't leave until he did.)
That's messed up what is happening to your nephew. I feel really bad for him. I don't know how someone can leave someone when they need them the most.
Norma I am so sad for your nephew and please let him know that not all people are like that....he deserves better!!!!
hugs to both of you!!!!!
Barb
Hopefully it is just making room for the right/better person in his life.
I am so sorry to hear that this is happening to your nephew. I am so glad to hear that he has family like you that cares and is willing to help any way you can. I, along with everyone else, can't imagine being in a position to be left in a time of desperate need. We count on our spouses...we married for better or for worse, in sickness and in health. It is so sad to me that those vows don't mean anything to some people. The words are just a formality to get through to "I do". Grrr.
Norma, my prayers are with you and your family at this time. I pray your nephew will recover and be able to tell his abandoning wife WHERE TO STICK IT!
Lots of love and hugs,
K~