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….