Do you have a future anymore? Now that your kidneys have/will fail?

[kickingandscreaming]

I know this is the kind of question that most people would rather avoid.  I ask it because I have become painfully aware that I no longer have a (viable) future.  At some point- I don't know when--I essentially lost hope that there was any future out there for me.  I  no longer have any ambition.  I have no creative urges.  No long-range plans.  I used to be interested in everything.  Now, my interests are very narrow.  No sense that there's a substantial time horizon out there.  I seem to be just marking time and trying to get by.  I don't know for sure, but I think if my husband were still alive I would have more of a sense of a future. Illusory perhaps.  But without that, I'm just a boat bobbing along in an uncertain sea.

[Michael Murphy]

How long has it been since your hubby passed, if it's less then two years most long term married people take several years to get over the loss.  This is why most recommendations are don't make life altering choices during this period.  I had a aunt who was devestated by the loss of her husband, immeadiately after she sold her house and moved to los vegas.  She was miserable it turned out vegas was no fun without hubby, worst still while she was there the vegas real estate market collapsed and when she came back she had to move in with her kids.  So just take care of your self it will get easier.  Finally look up implantable Artificial Kidney on the web, it's coming,testing in humans is due to start soon.  It will be a way to get off the dialysis train.

[kitkatz]

One day a time sometimes is the way to live.  Do things that make you happy each day.   Go for a walk or a ride.  Read a book or story.  Write something.  Just simply be for awhile.

[Charlie B53]

The batteries in your internal 'compass' simply need to be recharged.

Most people fail to recognize the onset of depression.  Depression can creep in slowly and eventually sort of take over, blocking out all the good vibes and making it very difficult to see much past the immediate of now.

A person much wiser than I once made the statement "Failing to plan is planing to fail."  Unable to see much future is very much like planing to fail.

I have much the same problem with exercise.  My anal glucoma makes it virtually impossible to get off my tired butt and get busy and do much.  I have to force myself to get outside,(If it isn't raining, or freezing). I make myself get a weed wacker and then I have to walk about edging around all the trees, concrete qwap 'She' (Not Me) has all over the yard. It makes me tired. Yesterday I had to use the little bitty tiller on the weed wacker and till the weeds in the garden.  I haven't paid enough attention and they grew up way quicker than I thought.

There is always something that needs to be done.  Mother Nature has a way of finding things to keep us busy.  The front flower beds that I tilled and seeded with a bunch of the seeds picked from last years flowers are choked with weeds already.  I don't recognize ANY flowers growing, just weeds.  I'm beginning to think the very heavy rains we had immediately after I planted may have either washed out the seeds or drowned them outright.  I still have a gallon (Plus) of those seed pods and thinking about starting all over.  Re-tilling and reseeding.  Hopefully it won't rain like that again, I can use the hose and just dampen the soil.  Maybe they will grow this time.

It gives me SOMETHING to do to keep me occupied, burn a few calories, which would hurt that jelly roll around my middle.

Our Dog follows me around, lays and watches.  I'm sure he is often think "Just WTF is this crazy human doing?"

You just have to look around you and find 'things' that you can do a little at a time.  One thing leads to another.

[kickingandscreaming]

Just to set the record straight:  I'm not depressed.  There's a big difference between being depressed and being in awareness of the existential plight that i'm in.   I'm old.  I'm sick. I'm out of work.  I'm alone.  At nearly 76 with very little energy at my disposal lately, I have lost my aspiration.  I'm not looking for little things that I can do to fill time.  That's not what nourishes me.  I have plenty of things to do.  They are all tedious (setting up Pd/ breaking down PD, laundry, clearn up, take care of my dog, etc.)  My husband died many years ago (1999) so I'm not still grieving, but I'm noticing how different my life would feel/be with him still in it.  With all their flaws, our spouses are good a providing a structure and container for our lives.  Along with youth and good health, there's a lot missing from my life-- the kind of stuff that gives life meaning.

[Michael Murphy]

So your 76 and bored.  Find something useful to do. 76 is not the end of the world.  Find some volunteer work you can do, if you can drive meals on wheels always need help, libraries, schools, churches are all looking for volunteers.  I am sure you have much to share where you are needed.  If volunteer work doesn't meet your need go back to school.  Challenge yourself. 

[SooMK]

Hi K&S, Aside from kidney disease, I wonder if a lot of what you're feeling has more to do with getting older. As a transplant patient I have so much to be grateful for and yet your post resonated for me. I find that although I forget what I walked into the room to get I can readily remember a hurt from 45 years ago. My body disappoints me nonstop and the news from home is nonceasingly bad. The sad stories never stop and the alarming news is relentless and yet... I remind myself that life is about people and one of the things that makes me try to be open to the odd stranger interaction is how I feel after a positive accidental encounter. Although kidney disease is our burden, other people have burdens just as heavy and everyone wants to be heard. To quote a poem by Mary Oliver, "Tell me, what is it you plan to do
with your one wild and precious life?" That's relevant whether you are planning for one day or much longer. We can't help that our minds return to the tediousness of routine but I think just changing it up in some new way can make a huge difference. A day can go from partly cloudy to partly sunny in a few minutes, we've all seen it happen (the reverse is true but we're not going there right now). There's lots of work to be done and lots of ways to do it. Or, there's fun to be had. You are very clear on defining the problem so I think you know the solution. Feel bad for a little while and then make some little change to your life. You don't  have to want to do it (whatever it is), just do some little new thing or something you used to enjoy but haven't done in a long time. Talk to someone new, call someone you haven't talked to in awhile. Wishing you the best.

[kickingandscreaming]

I can see that my "question" is arousing the usual pablum answers: get a hobby, get involved.  It so happens that I am already doing all of those things.  What I meant to elicit in this thread (and it clearly didn't work) is some degree of serious questioning about just how meaningful can a life be when saddled with a life-threatening, chronic disease or 2.  Sure, I can hold out for the "miracle" cure which is unlikely to come in my lifetime  (I, too, follow the news about the implantable kidney). So it looks like no one else wants to stop and think at all.  Just keep busy. That's all that counts.

[kristina]

I know this is the kind of question that most people would rather avoid.  I ask it because I have become painfully aware that I no longer have a (viable) future.  At some point- I don't know when--I essentially lost hope that there was any future out there for me.  I  no longer have any ambition.  I have no creative urges.  No long-range plans.  I used to be interested in everything.  Now, my interests are very narrow.  No sense that there's a substantial time horizon out there.  I seem to be just marking time and trying to get by.  I don't know for sure, but I think if my husband were still alive I would have more of a sense of a future. Illusory perhaps.  But without that, I'm just a boat bobbing along in an uncertain sea.

Dear K&S, I am very sorry for your devastating loss and ... from my own experience I must admit, that some fundamental questions come up again and again, especially on a bad day.
But despite all that, I believe there is still an interesting future ahead, despite a sad loss and health-troubles.
For example, there are so many more thoughts and interests we can explore, so many more places we can discover, so many more musical pieces we have never heard yet and can find now so easily through the Internet and listen to on youtube, so many more books to read, so many more mysteries to try and find answers for ... and so much more to figure out. Of course, on days when "things" are not quite "up to scratch", life certainly can prove to be a bit more difficult than it is on other days... and those Dialysis-days, they just "get done and over with" whilst reading a good book/magazine/thought/idea and/or listen to favourite pieces of music and/or explore a good film to watch on youtube ...
I sometimes find it interesting to explore old films, which I remember from my childhood/teenager-years and whilst I watch them now it is most interesting to observe, how different films/different music pieces and different books influenced our life and the possible reason why they influenced us so very much ...
... For me it is also interesting to read and explore the life of composers and try to get a deeper insight into their life and resulting compositions... It is also interesting to observe that most composers had some terrible health-difficulties ...
For example, at the moment I am reading the book by Russell Martin about "Beethoven's Hair", which is the DNA-story about Beethoven's lock of hair, which has been cut from the dead composer's head in 1827 by a young musician named Ferdinand Hiller and was passed down for more than a century through his family. During the Second World Disaster it mysteriously found its way to the town of Gilleleje in Denmark  and finally it was purchased at auction in 1994 by two American Beethoven-enthusiasts and subsequent DNA tests have helped to uncover the probable causes of Beethoven's famously chronic bad health, his deafness and his final demise...
... Whenever I notice myself starting to ask awkward fundamental questions about life on Dialysis etc., I try to busy myself by visiting a new exhibition or visiting one of my favourite Museums to say hello again to old friends again (paintings I have been studying again and again for many years etc.), in an effort to get the balance back and see priorities again more clearly in their proper context...Whenever I visit these "old friends" (paintings, sculptures etc.) in their homes (Museums), it never fails to restore my positive thoughts and helps to look forward to all the possibilities ahead  ...
I am thinking of you and send you my best wishes from Kristina.

[Athena]

Just to set the record straight:  I'm not depressed.  There's a big difference between being depressed and being in awareness of the existential plight that i'm in.   I'm old.  I'm sick. I'm out of work.  I'm alone.  At nearly 76 with very little energy at my disposal lately, I have lost my aspiration.  I'm not looking for little things that I can do to fill time.  That's not what nourishes me.  I have plenty of things to do.  They are all tedious (setting up Pd/ breaking down PD, laundry, clearn up, take care of my dog, etc.)  My husband died many years ago (1999) so I'm not still grieving, but I'm noticing how different my life would feel/be with him still in it.  With all their flaws, our spouses are good a providing a structure and container for our lives.  Along with youth and good health, there's a lot missing from my life-- the kind of stuff that gives life meaning.

K&S, I can very much relate to what you have said in your original post and also this very intelligent second post. Although I am younger than you, I can relate to all the other circumstances you have described. I too am alone and fight each & ever day for my physical survival, which includes going to medical appointments & hospitals on my own & having to make sense of it all. I do mix with people but find that sometimes one can feel just as lonely within a group of people as when you are alone. I too struggle to find ways to fill up my time and am finding it increasingly frustrating to find ways to do that. I do agree with you that for all their flaws, spouses do provide a good support structure for us to get by in our daily lives. Reports tell us that marriage does more to prolong the lives of men than it does for women but I really don't believe that. I see quite a number of elderly women who've had wonderful long marriages being active in the community & being very much supported by their husbands. But I guess for all of us who finds themselves alone, what good is there to dwell on this? (Rhetorical question). Also, keep in mind that a lot of people end up alone in life. That's a verifiable fact.

I really like the way you have described your situation without resorting to that tired over-used label of depression. It is so over-used that it has lost all meaning, as far as I'm concerned. Feeling the way you do is entirely normal and within the reasonable bounds of normal human reaction. I applaud you for stating this. It actually helps others to hear this.

I don't have any pithy answers but when it comes to the feelings you've described, they come & go in intensity like all the other emotional states (including joy & happiness). You are a highly intelligent woman & I wonder whether you would find it rewarding and meaningful to be speaking to younger people? I find it amazing how much younger people feel the need to soak up with wise counsel of older people sometime. Just one little suggestion.

[smartcookie]

I think you are right, Kickingandscreaming.  I believe most people would rather stay busy then face the realities of being a sick older person.  I think if I was in your shoes, I would feel similarly to you, especially as I have a dependent personality type.  Chronic illness can suck the life out of you.  I experienced a small taste of that with my back problems, and mine are not even life threatening, just life altering.  Life changes, people grow apart or pass away, days drag on and meaning can be hard to find.  We are not guaranteed to keep our partners in life, and that sucks.  Kidney disease sucks.  Dialysis sucks.  Diets suck.  Life changes can suck.  Not all changes are good and growing older definitely can suck.  Life can be filled with doing things and getting things, but when you get older and you either lose those things or cannot do it anymore, life just becomes kind of bland.  And that is okay.  Some people are good with bland; bland beats hectic and scary for some people.  But you, from what I have read, are intellectual, gregarious, ambitious, loving, and tender hearted.  Bland is not enough.  You are looking forward and seeing that at 76, the days before do not equal or outweigh the days behind you.  The big things in life have happened.  The next big thing is probably death, if that darn artificial kidney implant doesn't hurry up!  And that's okay.  But why bother with big ambitions and dreams when you know what is coming, whether it be 20 years in the future or next week?  I think you are preparing in a way.  I probably would, too.  A life of dialysis at 76 is different from a life of dialysis at 20, 40 or even 65.  I don't think you are necessarily depressed, though you could have your moments, as we all do.  I think you are just being practical. 
If your husband was alive, that would be a different story.  It gives you more stability, more passion, more intellectual stimulation.  When you live alone and just have a dog (who I know you adore and is a part of your family), you do miss out on conversations and just good old human company.  And no relationship is at rewarding as with your spouse. 
 

[Rerun]

I hear you K&S.  I feel like a leach on Society.  I am alone, I wish my ex was dead (oops), I can't drive anymore and I'm going blind.  GOD just take me.  I'm just taking up space and sucking up money that could be used for someone else.  I'm not depressed either.  I'm a realist.  I'm down to crocheting  dishcloths to take up time. 

Do we quit?  or Do we live because something may be around the corner.  ??  I don't know.  One day at a time. 

The artificial kidney would require another surgery.  Screw that!

I'm looking forward to the driverless car that costs less than $50,000....

[kristina]

P.S. I do apologize for sounding so very positive and extremely up-beat in my above written thoughts about the future etc.,
but my husband and I have just received the all-clear of cancer (him 2 years after intensive treatments and me 5 years after intensive treatments)
and we heard the good news within the last two weeks and are extremely grateful that we are "still in with a shout"...

[kickingandscreaming]

Congratulations, Kristina.  That's great news.  And thank you to those of you who wrote thoughtful responses to this "existential" question.

[kristina]

Many thanks K&S for your kind thoughts and understanding 
and please feel free to let me know if I can be of any assistance or help.
Kind regards from Kristina.

[KarenInWA]

I am 43, and have been living with CKD for 20 years now. I fell into ESRD 6 years ago when I went on dialysis in April of 2011. In November of that same year, I was blessed with a living donor transplant from a non-blood related family member. A few short months later I almost lost it due to a biopsy gone bad. I have been living with a low-functioning kidney transplant ever since, but it has been stable. I work FT, am blessed with a job that pays me well and provides me with amazing insurance. I know all of that can change in a heartbeat, however.

But, while this is my reality (of stable health, income, and healthcare) I choose to live life as fully as I can, and listen to my body in the process. I have been re-listed since summer of 2013, but have spent most of that time inactive by choice. I am inactive on the list right now due to being stable and having future travel plans that I don't want to miss out on. I was depressed about my health in my CKD3/4 days, but when I started dialysis, I told myself I had to look at things differently and not let the big D or ESRD win. It's my way of surviving.

I live alone with a fat cat, and have never had what I can even attempt to call a real relationship. My friends have been there for me, and some family members. I am very thankful for them.

KarenInWA

[OlManRivah]

Damn, you could be perfectly healthy and get run over by a Mack truck.  Enjoy your life. . . .

[Rerun]

That's not the point.  We know some people are worse off.  We know .... at least you can breathe.  This site is a place to come vent.  We get to have our pity party here so maybe we can function and not take it out on our family and friends.

We all KNOW .... at least we can live when people with cancer don't have a choice.  We know that.  Sometimes we just need to talk it out.

[beckums70]

I remember very well, the exact feeling you describe around the time I first started dialysis. I felt T 43, like I had already done all the things in life that people seem to
Accomplish.  What more was there for me?  Relationships are surely a thing if the past and I'm single. I can't imagine any man would want to be saddled with my physical and financial challenges, plus my son to raise.  I lost my home a year after I started dialysis and had no job, no one would hire me, even part time. I had no purpose and no hope for a future really.  Nothing to look forward to anymore. 

Since then my life has gone through some very difficult changes.  I've moved 3 times in 2 years.  I now have a part time job that is below my skill level? But in a way, fulfilling--or at least better than sitting at home.  I have 2 grandchildren now, which keeps me busy, but even that doesn't give me the feeling that I have important things to look forward to or accomplish in life.  Those kids are my daughters purpose and journey, not mine, no matter how much I live and enjoy them.

I am only now, 4 years into OD, starting to change snider the idea that I CAN make plans for the future.  I can find not just things to keep me busy, but things that make me feel like I have a purpose and something to accomplish.  I'm learning to live in the moment, which is something I've never been great at...and learning to relish the quiet times I can use to enjoy the life I've built for myself.

I think we all battle depression based not on a mental illness spectrum, but in our very challenging life circumstances.  How could we not? It's perfectly normal and reasonable that we feel lost and hopeless at times. 

I don't have any advice for you, but I do understand the feeling if "waiting around to die" that's what I used to say.  I used to wonder, why prolong the inevitable, but now I can see that there are people whose lives I have touched and changed without even realizing it. 

I hope that time and the challenges and chNges you face can help you find your sense of purpose. 

[Michael Murphy]

In my case after a major cardiac event last fall I am not in good shape.  Since the event I have been unable to sleep in a bed or a recliner since I could not breath.  The only sleep I was regularly getting was on dialysis because I was put on oxygen during dialysis.  My doctors were ignoring the whole thing.  Last mounth I decided on the 19th if there was no progress I was going to stop dialysis.  With that understanding I went to my cardiologist was told to agressilvely to have fluids pulled during dialysis.  It turned out I was suffering from Congestive Heart Failure and was retaining   Fluid. Things are better but now every19 th I am deciding to continue dialysis or not.  I am glad I have a choice but I know eventually the answer will be to stop if my life is degraded by medical issues.

[beckums70]

I wanted to add that from a professional perspective, at 75 and widowed, your feelings are not all that uncommon.  I work in senior services, and before that in long term care where I was around seniors on hemo quite a lot. 

I witness many seniors who merely exist from day to day. Some sit in front of a TV all
Day to combat loneliness (they're usually introverted people) others make busy work for themselves or obsessively focus on their health to the point that doctor appointments and health management is all they live for.  It's like their whole life centers around merely staying alive.

As I told my own doctor a few years ago, there has to be more to life than merely surviving.

My job now as director of a senior center for active older adults has opened my eyes to
Some new perspectives on what makes a life purposeful and gives it quality.  Introverts have a harder time reaching out and making connections with new people. Compounding that issue is trying to find a friend who understands and empathizes with your ESRD and dialysis.  From what I gather reading your comments, your husband must have been an enormous motivator for you.  Could it be that he challenged you in ways you cannot challenge yourself?  Yes, I know we all face an enormous challenge every single day, but we also tend to need PEOPLE or at least one person whom we trust and share a strong connection.  They tend to help us stretch our own boundaries, real or perceived and encourage us in ways that give us hope for new and different experiences to let the knforward to.  I've struggled myself as I've witnessed my friends buy new home mes, find new love interests, further their careers...  Meanwhile I feel stuck.  Unable to even imagine having any of those amazing things happen in my life.

This is where I've had to learn to be mindful, present and grateful in each moment for whatever joy it brings me.  I've had to learn to challenge myself, rather than look to
Someone  else for motivation.  I've had to learn to accept that I'm single for good now.  I will never have a life partner, which makes my few close friendships even more vital for me.  I am introverted myself, so it's easy for me to isolate myself and get too focused on what's missing from
My life rather than being present and grateful for the things and people I do have.

All of this said, there are very valid studies that have found for many older adults, dialysis does not improve quality of life, and can in fact decrease a person's quality of life.  Many older folks opt out of dialysis altogether or opt for help because they are afraid of doing PD at home.   In my opinion hove made a brave and bold choice to manage your health in such a way, but it seems to have become your solitary focus.  It's easy to allow our disease to define who
We are, especially when we've spent a lifetime as someone's wife or someone's mother and never found our own sense of purpose outside those roles.

So if you were a senior I just met, telling me that your disease and its management are sucking every ounce of joy from your life and you see no
Possible way to improve your quality of life while on dialysis, I'd ask you, "would you rather be happy for remaining days, not having to think constantly of dialysis. Diet, doctor appointments e.g. ..or do you find enough joy and purpose to make all of this worthwhile? 

I believe especially for seniors the decision to stop dialysis or never start is perfectly reasonable and understandable.  However, if you are even slightly hesitant to give it up, perhaps there is something more for you to learn, do or accomplish in life before you give up.

Again, I totally understand how you feel. Still have bouts of feeling that way myself sometimes.  I have to remind myself to remain in the here and now, take each day as it comes and see where those days eventually take me.  Every day is another step forward in a journey that's taking us somewhere for some reason of which we may not even be aware until we get there.

Whatever you decide, it will be the right decision for you, but I encourage you not to quit out of that nagging feeling of hopelessness.  If you must end this part of your journey, do it to reclaim your life and your joy for However long you can.

Don't outrule reaching past your comfort zone to make new friends who can help you focus on more than mere survival.  Join a senior center, attend a few days a week and try to make a connection with someone who is akin you.  The future, after all, is just a bunch of moments and days all strung together.  Why pressure ourselves to make big plans when we can just enjoy living?







sp mod Cas

[Charlie B53]

Depression is a very broad brush, more like a roller as it covers so much so quickly. Intensity of depression varies just as much as the colors of the rainbow can vary not only in the shade of color the the depth of coverage.  Some need many many coats for the color to become obvious while others may only need the single coat.  All fall under that very broad umbrella, depression.

Humans were never meant to be alone.  We are social creatures, learning and sharing knowledge and experiences so to improve the lives of everyone we come into contact with.

Society places emphasis on the activities of the younger generations, often failing to include the aged.  The aged are often left alone to try to occupy their time.  Not conscientiously shunned by the younger generation, just forgotten in the rush of the younger generations pursuit of having everything right now.  Few develop the patience to plan very far into the future.

I could be a hermit, perfectly happy to have a cabin next to a river. But I don't, yet. I have limited contact with other people since being retired, I spend the majority of my time alone. In the yard, garden, messing with big boy toys in the barn, getting my new to me boat together so I can eventuallly go fishing a few times every year.  Projects. I may not live long enough to get them all done.  If so, who cares?  I won't as I would be dead.  If I do get them done then I will find other projects to work on.  The garden always has weeds.  The yard is always growing. I do have a certain amount of depression over my physical and medical conditions but I only have to live with them.  I do NOT have to sit and think about them, I may not have the time to waste.

None of us know it all.  There is always more to learn.  And we can always share our knowledge with someone else.  Looking for those opportunities to learn and share, that is worth living for.

[Michelle2016]

To all of you who posted messages:

Thank you for the postings. They are great. I have to take times to read and absorb because I really need it. This site is a best place to get help and help others.

To rerun: you are right. There are some people worse off. Some of the people have only a few months to live after diagnostics. For us, at least we have chance to fight and to improve with our lives.

I have had  kidney disease for about 35 years. It's rough. But I can't quit. I have to work to keep my health insurance and be financially independent. I have to be there for my 88 yrs old father.

Again, I need to takes times to read those messages. They are great.

Take care.

[GA_DAWG]

It can be a devastating change when this disease first rears its ugly head, and I can only imagine how much more difficult without a spouse. I know I certainly am thankful for the love of my wife and kids. Maybe, if it is serious human contact you seek, you could volunteer to help new patients as they learn to adjust to dialysis. I was lucky when I began that I was seated next to a guy who had over 25 years on dialysis. I was able to learn so much from asking him questions and his generosity in answering them and helping me with everything from diet to how to avoid butt burn out from the well worn chairs. I have been doing this for five years now, very short time I know, and we lost this gentleman a couple years ago. In an attempt to repay his kindness, I try to be available to answer any questions for newcomers. I know the wide-eyed look and if I can help, it is only paying it forward.

[solid98]

My dad retired 10 years ago and moved from New Jersey to Oklahoma. You know what gets him out of bed every morning? He has a big oak tree in his front yard, just off the porch, and it had a ton of squirrels in it. He pulls up a lawn chair on the porch, sits one bucket on the left side and one bucket on the right side. The bucket on the left side is full of in shell peanuts he tosses to the base of the tree for the squirrels to get. The other bucket is full of the little rocks he throws at the same squirrels when they come down for the peanuts.

He's happy, the squirrels seem to have a good time dodging the rocks, and it keeps him from bugging the shit out of his wife. Win, win, win all the way around.

Personally, I find myself just sitting and watching the birdfeeders and squirrel feeders in my backyard and just enjoying appreciating the extra day that evil, rotten, rat-bastard cycler machine has given me.