Life goes on -2-

Just an update:

Well it has been a minute since I wrote anything.  A lot has happened since I last wrote, my husband’s health has improved in some instances and worsen in others.  His prostate cancer seems to be under control and is doing exceptionally well.

Last year around August we started with the urinary incontinence and it was really bad, I threw away lots of pillows and bedding that I just could not get the smell out of.  Finally in December they inserted a catheter to take care of that problem.  We thought an enlarged prostate caused the urinary problem, so the end of February a partial prostatectomy was performed but it did not help.  It actually caused more issues and we had to make a trip to the ER.  This turned into a hospital stay for 4-days, where heart issues were again discovered.  This required the insertion of a pacemaker in the beginning of April.  Then in November he started with the fecal incontinence and we threw away a lot of clothes and bedding.  The thought was the fecal incontinence was because of medicine so we had it changed but it did not help. We purchased a lot of items, bed pads, disposable underwear, catheter supplies, pillows and waterproof pillow covers, sheets and waterproof sheets, wipes, cleaning sprays, laundry smell supplies, disposable bed pads, washable bed pads, shorts, t-shirts, long pants, pajamas, and the list goes on.

The “Vascular Dementia” seems to be much worst than the prostate cancer.  I do not know what is going on in his mind but he makes comments sometimes that he would be lost without me.  It is hard because I remember him as he use to be.  But to see him as he is now is really hard to bear.  He no longer seems to care about himself, which is so totally opposite of the man he was.  His sense of smell if mostly gone, so he does not notice the odors.  He gave up his driver’s license because some of his doctors said he should not drive.  My responsibility is to be the driver, make sure I attend all doctors appointments, schedule all doctors appointments.  Make sure I keep a list of all medications, his and mine.  Keep a list and phone numbers for all of his and my doctors and make sure I know what doctor does what.  Keep up with all of his ailments and monitor his health so I can explain to his doctors when we visit.  His answer is always “I do not have any pain or problems.”, but he will complain to me but does not remember when we visit the doctor.  He does not pay any attention to what is happening with his body so I have to check and tell his doctors or call if needed or take him to the ER when needed.  He does not cook so I make sure he eats.  I try to take him out to eat so he has some social interactions.  I take him to the nail salon to get his hands and feet done monthly.  I make the money decisions.

So many questions:  How do you get someone to take better care of themselves?  How do you get them to understand that you are only trying to help?  How do you stop judging yourself ?  How do you stop feeling guilty that you are not sharing your bed anymore because of the smells?  How do you help them to understand?  How do you get them to change their disposable?  How do you get them to wash their entire body?  How do you get them to clean the shower instead of leaving poop on the floor?  How do you get them to clean the toilet after smearing poop all over?  How do you get them to put down a disposable pad on the foot stool or change the dirty one?  How do you get them to pick up their dirty/soiled clothes and put them in the hamper?  How do you get them to actually go to the bathroom to poop instead of in their disposable?  Then sleep in it and get diaper rash.  How do you get them to take their medication instead of you having to wake them up and hand it to them to take?  How do you get them to stop raising their voice when you do not do what they like?

The dependency is real.  The need for attention is real but all of this is on their schedule.  Even family is a problem because they take that attention away from them.  Separation is a hard thing and I believe it is felt deeply anytime the attention is on someone else.  You are no longer an individual you become the other persons’ life line.  You start to resent that person and all you have to do for them, then you remember that you married “For better or worse, in sickness or health, till death do you part.” and this keep you going.

The struggle is real, but LIFE GOES ON….

Life goes on

March 19, 2018

Well, I am going to start writing about my life as a caregiver.

My husband and I both are retired military both retired Navy.

I have lots of medical issues, so I always figured it would be him taking care of me.

My husband retired in 6/2011 when the base closed in Athens, GA.  He proceeded to smoke and drink heavily every night until 2016 around August when he noticed that his right leg was swollen.  We went to the ER and it was discovered he had a blood cot.  He immediately was put on Xarelto and directed to see his regular doctor.  His doctor put him back on high blood pressure medication, diabetes medication, and high triglycerides medication.  I had to take over making sure he took his medication, so he would not miss a dose.  Starting in October of that same year it was discovered that his PSA was over 500 and he was scheduled for a prostate biopsy.  It was rescheduled three times because of high blood pressure.  He was sent to a cardiologist because of a abnormal heart EKG and his high blood pressure medication was changed.   In April of last year he finally was able to get the prostate biopsy and was diagnosed with prostate cancer.  This by itself was an unexpected diagnosis.  Then towards the end of the month, I had to take him to the emergency room, he had a protrusion in his lower abdomen.  Come to find out his prostate was enlarged and he had not passed urine in 4-days, but it was leaking out, “I thought he was peeing in the bed”.  It was backed up so bad it was affecting his kidneys, they said he was almost in kidney failure.  Fast forward to 3-days later and they finally got that under control, but he had lost about 30-40 pounds and had no strength.  While he was in the hospital, they decided to do a bone scan, finally, and the prostate cancer had spread to his bones.  We can go home with home health aide, (nurse, occupational therapy, and physical therapy) and a walker.  Home health nurse coming weekly to check and changing his catheter every month.  First month, cannot get catheter in, they sent catheter supplies, back to ER, wrong catheter, needed a CUDA.  Next month, ER gave us a CUDA, but finally got them to order correct supplies, so catheter in but blood coming out, Urinary tract infection.  May starting getting “firmagon” shots monthly from urologist for cancer.  ER doctor recommended visit to hematology/oncology for prostate cancer.  Added this doctor,  Dr. K., in June, he suggest additional treatment, “zytiga and prednisone”.  June back to ER for pain, another urinary tract infection.  Urologist tried to remove the catheter, he is walking better with the help of physical therapy.  Diagnosed with vascular dementia,  this is causing the walking/picking up feet problem and bowel control problem.  Finally in July get the catheter removed.  In July, back to ER after getting an ultra-sound on left leg, 3-blood clots, CT Scan, one pulmonary embolism in left lung.  Fast forward to February 2018, prostate PSA is undetectable, but still taking “zytiga and prednisone” and “firmagon” shots monthly.  After visit to Dr. K. in November, where the dementia was noted, the doctor suggested my husband not drive anymore, so now I am the driver.

New issue with spots in lungs.  Will find out more in 3-months, visiting pulmonologist, Dr. G.

Kutherian Universe

Kutherian Universe

Kutherian Gambit, Age of Magic, Orcerian, etc.

All of the books I have read in these series are outstanding.  I got hooked and now I cannot wait for each new book to come out so I can read it.  I find myself stopping other books and making sure I read the latest book as soon as it comes out for this series.  The author has branched out into so many different directions for this series and all of the other authors that have been invited to participate are outstanding.  This is truly one of the most outstanding series I have read.  Michael Anderle and gang have all exceeded my expectations.  Well done.  So much excitement, adventure, and laughs in so many different books, it is amazing.