over this past few years (6) of being on the stage 4 P.C. journey...I've been believing my partner would be there as caregiver. However....over the past 8 months I had been noticing him being "different". I talked to our primary care doctor about it...who did a bunch of blood tests....and then said he thought it was ALS (SCREAM). He referred us to an ALS specialist who now thinks it's LBD (Lewy body Disease)...going in for more tests this month. (SCREAM)
He can already no longer drive...so I am sole caregiver for Me and HIM and another person who we had been caregiver for almost 2 decades. I'm the only driver...cook, cleaning crew...and "cheerleader".
It's getting scary, but it's keeping me from focusing on my own hot flashes...weakness...etc. I'm focusing on waking every time my partner wakes to go to the bathroom...or just walk around the house...to make sure he makes it back to bed(since evenings are the worse)....and this month I am scheduled for an orchiectomy. I've got a very long drive to the hospital...so I am getting a friend to drive me down ....wait ...and bring me home.
So what you think the "reality" is can change in an instant. That is the life lesson I have taken from this. As a former Boy Scout....I keep repeating the mantra "Be Prepared". Life is really like a box of chocolates....just some of the chocolates suck! Photo is us having a Clif bar breakfast picnic on the suv tailgate waiting to see his ALS specialist.
gJohn
p.s. the doctor says he should start using a cane or a walker....**for now I am holding his arm when we walk...figuring if we both go down...we'll each cushion the other's fall.
p.p.s. my PSA has been on a gradual uphill journey ...even though my scans are looking BETTER...with no bone met (I had one that is gone since having radiation) and my two lymph nodes (the only other two mets found) are less than 1/2 their size. (Axumin Pet Scan results)
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greatjohn
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It is a battle we fight everyday... love ones make the journey easier but sometimes we share the burdens we encounter that make the road more difficult but thru God's grace we can meet it head on and he can carry the burden for us till our ultimate glory!!!...Fight On!!!
John you are so right situations can change at the blink of an eye. Stay strong and keep up the fight. Last month my wife lost a childhood friend to covid which came out of nowhere. Glad to hear your scans are stable.
Great John you are in my prayers, it's horrible to watch someone you love go into decline, the fact that it's a caregiver intensifies the stress. You are absolutely right that things change and it many times is not what we expect or plan.
I recently experienced that, had just met with surgeon about implant which at that meeting would have happened about now in this month. Eight days later I had another PSA and for first time in nine months was marginally detectable and my URO wouldn't tell me because it was so small. I'm sure he didn't want the discussion that would involve. They took surgery off table for now because they found a crevice in my lower abdominal area which they had to close and injected me with Erlaeda, which I HATE and am waiting to see an Oncology Radiologist, but the implant surgery is postponed for several months a major disappointment after getting this close. You still remain in my prayers brother. I admire your courage and as I have told you before you have been a tremendous help on my journey.🙏🙏🙏
Life is a beautiful challenge. Sometimes we just love embracing it, sometimes it throws us a curve ball and the funny little bit about life, is just when we thought we were cruising along but with a little blink it reminds us how fragile life actually is.
You have a great purpose here of looking after your two buddies and yourself, rest assured all will be well and you’re going to come up tops.
Pace yourself, look after your loved ones and remember we’re always here for each other ❤️
I would have never guessed this would be where we are now. He is 70 years old now...so things start happening.
gJohn
I’m sorry about your partner .. that’s scarey for you both ..I give thanks each day that I, and not my wife have this C.. good luck moving forward John .💕
You are such an inspiration and a blessing to so many...you are keeping a great attitude despite all the hardships, and using your best advice to live one day at a time and count your blessings...My thoughts and prayers go out for you all. 🕊️🙏❤️
As you continue doing your transition planning for the times ahead, I hope you leave some room in there for some "Plan B" assistance with activities of daily living alternatives, and for some ways for having some caregiver Respite assistance and breaks for yourself when needed.
My doctor this month has convinced me that I do have a lot on my plate...and I am seeing a psychologist for the first time in my life in a couple of weeks 🤔
This must be so hard for both of you. I know that you’ve been with your partner for a very long time; a real testament to enduring love. In sickness and in health... I hope you can find outside resources to help with some of the physical and emotional stress.
Great Scott ..Great John .!!! I’m sorry to hear the news of your loved one. I know the scary thoughts that thinking of loss of your one and only caregiver can bring , and now the double whammy of having to be a caregiver just when you need one yourself. Dang brother/s. My heart really goes out to both of you. I’m thinking positive thoughts ( transfer of merit ) for both of you . 🌈🌸🦋🌼🌻🌵❤️❤️❤️❤️
I finally get your forum name. You have so much going on and based on your posts you seem to be taking it in stride. I wish you and yours my best and hope you find joy even when your getting hit from so many directions. Take the clean scans as a win for now, there will be others if your open to seeing them, there always is.
I've personally found 2020 has a nasty habit of scuttling any plans I make, and sometimes it has a sense of humor about it. My wife's aunt recently passed, and my wife is effectively the sole surviving relative (on speaking terms at least, but that's another matter). My wife has been trying to offload as much as possible to other people, but still she is the sole heir and executor of the estate. This is all happening while my cancer is progressing and treatments are changing and I'm meeting with new doctors, scheduling biopsies, etc. This all lead to me having a weak moment a few days ago, and my wife attempting to comfort me, and in a silent moment a mouse could be heard chewing in the bedroom wall, because 2020 does have a sense of humor, and sh!t doesn't stop happening because we have cancer.
This is but a small sampling of what you must be going through, but still, I sympathize, and in a weird way being needed in some way despite our disease and difficulties helps keeps us moving which has to help our prognosis. I'm happy every time I can do something for my wife, even if it's just making a cup of coffee for her when she sleeps in later than me.
Stay strong and keep enjoying each day as much as you can. My current favorite definition of "beating cancer" is making the most of each day despite the disease, and you do that as well as anybody. The only guarantee is that 50 years from now we won't be as capable as we are today.
So sorry to hear of your partner’s difficulties. You are certainly a courageous and caring man. I’m sure that beautiful cup of coffee is the best part of your day. I raise my own cup to honor you both. Prayers lifted up.
Sending you both prayers and virtual hugs xx Seems like you both have a positive mind set. Your love for each other will help you through this scary new chapter in your lives. God bless and stay strong
"People" say this all the time, BUT...I just said a huge prayer for all three of you, most especially for you greatjohn. Caregivers get the other end of the greasy stick.
I really hope the tests prove it's not LBD or ALS. 2020 has got to be good for something. Will your insurance or Medicare or ??? help pay for a home healthcare aide? You absolutely need one. Some years back I worked for a company that provided this kind of help - CNAs for personal care and choreworkers (me) for cleaning, driving (for appointments or just to cruise around), grocery shopping, laundry, even yard care - the grunt work (this is how I learned the hard way not to clean a tub with Windex and bleach...who knew?). And RNs paid regular visits to make sure things were going as well as possible. Insurance of some kind always paid for all or most of the cost. You probably know all about this already, but I thought I'd ask, because if anybody needs this kind of help, you do. At times devoting yourself to care of others can indeed take your mind off yourself, but the stress is considerable and it does accumulate, and that's not good for you, and you have to take care of yourself be at your best (it's relative, of course) to be a caregiver.
Thanks for the update,-- glad to hear your cancer is regressing -- hopefully your partner will turn it around also... keep hanging in there
It saddens me to learn of the added difficulties you are dealing with. I hope your psychologist can provide support beyond just a prescription. I'm glad you shared. You know you have support here.
Been following you as close as I could since joining site. Sorry to hear of your partners troubles. He has been there for you a long time ,now sorry to see you swapping places. I still manage to take coffee to my wife in bed every morning now that I am again able to do so. Feels good to do even little things like that for a loving partner. Best of luck to you both. Keep your spirits up if possible.
Ah well, at least you two probably don't suffer touch deprivation syndrome, TDS, which was discussed this am on Radio National ( The Australian ABC radio station owned by the peepel and still free to tork about any ting anyone is into. )
Of course in this C19 daze. many ppl have become even more allergic to touching or being touched, or caring about others, hence there have been so many premature deaths here in homes for elderly ppl, run by greedy middle aged ppl wanting to make millions from older ppl, and unwilling to employ even younger ppl to look after old ppl.
So far, even with stage 4 Pca, I manage to mow lawns, mow grass, cook dinner, cycle 200km a week and find my way to all the many doctors appointments each year.
BTW, I am about 125% hetero, but now de-sexed by doctors. But the most deeply touching experience I had in the history of my Pca was way back in 2010 just before getting EBRT to fry my PG. I had to visit doc at hospital just before this, and I'd started ADT 8 months before, so the size of my PG had to be estimated. Instead of the radiation man, I had registra attend me and she looked like she could have been Miss India, easily, and it was a case of "lie down here..." - so I do, ( whatever you want darlin - I thought ) "now lust lie on your side" and no problem. Then in goes the prettiest middle finger in Australia to feel up me PG. It definitely was the most deeply touching thing I'd had for a while.
But since then, almost nothing except nurses putting needles and cannulas in, pulling them out. Occasionally I had massages from massage ladies. One hour spent with one to ease problems in knees, hips, spine etc, etc, but without "happy ending" kinda supplied the same amount of touch I'd had in previous 20 years.
Enny Way, I am quite OK with solitary existence at 73. But good to hear you two seem good for each other.
I'll get out later on bike to do a ride later......
I just don't seem to need love or compassion or hugs, kisses, and all that human contact stuff I once needed until a you wife mentally imploded and vamoosed, then all other sheelas I met did a similar thing, they go fine for awhile, and profess their love etc etc, and then ditch that mental state completely, and then just leave in tears not knowing why, not knowing who they were, and but knowing they had to leave, and repeat all that with next bloke. It was Wymmins' Liberation in action, and I was most unimpressed by any of it, except to say the sex was enjoyable for awhile. I was expert builder, maker and doer of things, and hopeless at working out mental qualities of ppl, and if I ever spoke my mind about such stuff I was always howled down and told I was wrong, so I just retreated from ever trying to work out ppl; they either liked me or they didn't, and that got me my income when I worked for ppl, but got me nowhere with relationships. So by 40 I knew I'd never have kids or marry well, no family life, never be valued, but so what, because all that supposedly good stuff costs serious dough and time, and I didn't have a high income to buy loyalty, fidelity, or anything lasting with the sheelas.
I have witnessed so many blokes fall apart by 50 due to lousy realities of their dysfunctional family lives. I know guys who married 3 times, and now at over 60 don't possess a house, so they must find rent, so there's a lot to gain by not being socially needy, and keeping good distance away from others, even when there is no pandemic of C19. I am self sufficient.
This could easily change if I fell off my bike and broke a lot of bones, but it ain't happened yet.
I get a bone density scan tomorrow to find out just how weak my bones must be.
But I ain't accident prone.
I did a nice 65km today. Got some Spring Cleaning done.
See we never know What life is going to throw at us I still worry about my husband but what about if it’s me . Just cause I’m doing all right right now doesn’t mean something it happened. I hope you can find people to help you because it sounds like you’re going to need it I’m going to send lots of prayers to you and your partner Sharon
GJ, life is so cruel at times. My partner brings me a cuppa in bed most mornings too, it's the little things that seem to mean so much these days. And "life goes on, even when the thrill of living is gone"! Now, who sang that one? 😎DD.
Ah yes, so it is, great song Mr Mellancamp. Life does go on regardless of what happens to our health. I've recently gone back to work for a few days a week and found that the place survived without me and discovered some things had changed. The wheels of business do keep turning which reinforced my thoughts of retiring early. Taking all my leave and driving off into the sunset with my wife and dog in our small campervan to Margaritaville. Hmmm, now who sang that one....... 🤔 DD.
Thanks so much....reading your profile and seeing that you live in Ireland brought back wonderful memories of our holiday to England/Scotland/Ireland summer before last. We loved the Irish countryside and some of the great hotels we were in and cities we visited. Plus loved the cooler summer weather (since are HOT HOT HOT in August / Sept in South Florida)
hope all's going better with you with the incontinence and such. I've given up and wear a pad all of the time. I have pretty constant "stress incontinence" for the past year.
thanks...it's not getting easier. I don't know who should be caregiver at this point....and I'm left with that role almost exclusively (since he can no longer drive) and I feel lost and a bit overwhelmed a lot of times during the day.
I'm so sorry, John. My grandfather had ALS. It's such a difficult disease. We just never know the challenges coming our way. Sending lots of love and good energy your way.
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Looks like just one bone met. Radiation or not?
I realize its hopefully a marathon but when should you sprint. 
Think it is time to change meds
One of the most heartbreaking things
