Dementia, Cancer, a Colostomy and now a Catheter

Is it only a couple of weeks since I last posted? It feels like months. My days have been busy as I cruise along the new learning curve with the addition of a catheter while still putting into place some house repairs to allow us to stay in our home. So much for planning to be prepared for the unknown; it is often a mythical goal. -- A visiting nurse and a wash aide are in place. The urine has gone from an opaque, robust burgundy to a hideous khaki green, somewhat translucent and less smelly. I am assured this is progress. On Tuesday, there is a follow up appt with the urologist. Hopefully, there will be clues, such as whether there is a surgical fix or this is the new normal. -- To the someone on this thread who suggested the VA as a possible source for help, thank you so much. The social worker on our case gave me a contact number. The addition of the catheter has limited already limited interactions with the outside world. I hope the VA can assist in a home aide for respite so I can attend my Writers Group and occasionally do some shopping. -- As always, I am amazed at the resiliency and adaptability of being a caregiver. I don't know if anyone remembers me babbling about setting up areas in my home with artwork that allows me to focus on something stimulating and beautiful, even if, from the corner of an eye, zipping onto the next challenge. Well, a few small art pieces on a brick wall are doing their job. The effort was well worth the positive payoff. -- Right now, I am steeling myself for the first haircut, shower, and shave without the assistance of the bath aide. I know this must be done if the VA does not come through. That unsweet spot of what I can do and what is required is still unknown, but it is better to prepare and not be entirely at the gods' mercy. When and if I hit the wall is still to be established. -- I can never convey how much jehjeh's note meant. Again evidence we are not alone. GloRo

When I first posted about the addition of a catheter to our litany of woes, I was close to panicking; but, like most things, you can become an expert if you keep at it long enough. We are into our second month with the catheter, as we wait for a November 1 appt. with the urologist for a possible diagnosis (or maybe not). Our new normal has come with a visiting nurse and bath aide. Of course, the expertise we have gained means the nurse and bath aide will be leaving us. -- Now, for my favorite part of these posts, I hope to make you laugh at the pitfalls we never thought about. The nurse put us in touch with a social worker. The social worker gave us contact numbers for the VA. I hoped we would qualify for respite care, so I called, left a number, and waited. It seems that timing is everything. Not more than 10 minutes later, I got what I thought was the answer to my prayers. It didn't take the scam artist on the line very long to figure out he had a cooperative mark. And when he called back days later and said my husband was approved for benefits, I gladly gave him banking information. Then, I hired someone for respite care on his say-so. Luckily, I do not do online banking, a favorite tool for scammers. Also, my scammer was pretty dumb and scrambled the info I gave him. But he was persistent. After his failed attempt, he called back three weeks later and when he requested more info to complete his plans to drain my checking account, my brain cells finally went on red alert. Am I a boob? Should I have known better? Yes, and yes. But, I was also weak and weary from the constant beating that caring for someone with dementia brings. -- I am also the eternal optimist who refuses to be defeated by dementia. I contacted the genuine VA rep on Friday. He was a caring person who opened a claim and directed us to the nearest VA facility to our home on Monday. By Tuesday, appointments for tests and doctors and a virtual meeting for education were in place. There might be financial assistance. At least, we are in the system. -- I am looking at this adventure with the scammer as just one more learning experience, on a long list. The woman hired to provide respite care is named Hannah. Somehow, I will figure out how to pay for her services. Since this journey with dementia is not over yet, it is still one step at a time. -- GloRo

@gloro
I am so glad you recognized the scam and that catastrophe did not strike. Funny thing is, I just fell for a scam 2 days ago. I, too, am very cautious but also extremely tired from being a caregiver 24/7. Received a text, supposedly from USPS, and gave my debit card to pay extra postage. Immediately realities made no sense and called the number. Got a message in a language other than english so I canceled my debit card.

I used to wonder how people fell for these things but now I get it. I'm always tired and always in a hurry. Need to remember to take my time when it comes to all things financial.

Things worked out for us both and maybe our posts will help someone else.

I'm glad to hear help is coming your way. jehjeh

I am intrigued and impressed with your tenacity and courage. From reading your posts, I wasn’t sure what the cause was for your husband’s catheter. I am curious as to how he reacts to it. My father, who has CKD, which is progressing, probably due to his CHF, would have a huge issue over anything touching his body. He would constantly be complaining something was stuck on his body, asking why it was there, etc. His dementia causes him to fixate on minor things like a pimple, insect bite, etc. and he can’t let it go. He becomes inconsolable. I worry that he could not handle something attached to his body. He’d likely remove it and suffer a lot of mental distress in the process.

How did the doctor know your husband would be a good candidate for this procedure?

Celia, blood in the urine, and pain brought us to a Urologist with a diagnosis of a UTI. The catheter was introduced only after the infection was cleared, and normal urination remained an issue. Whether or not my husband was a good candidate for a catheter was just the next step in his treatment. My husband proves to be unique. Usually a short-term solution, he is now 2 1/2 months with it. We hope that on his next appointment with the urologist on 11/1, there will be a diagnosis and a treatment plan. -- My husband also fixates on things, but not those that beleaguer your father. With health issues that can lead to a catheter, I fully understand you trying to prepare yourself with information. I wish I had something to share, but like dementia, it seems the variations of kidney and bladder issues can also be tailored to the individual. If and when our situation changes, I will post new information. GloRo

Thank you for the explanation. I hope things continue to improve for your husband.

My dad once told us that he hadn’t urinated in 24 hours and was very distressed and worried. So, I took him to the ED at local hospital. They did an ultrasound and determined that his bladder was not full. He was under a delusion. So, we have trouble relying on his accounts. Other times, he says he is continually urinating…..but he isn’t. He does have CKD so I expect something regarding that to pop up soon. He’s not a dialysis candidate. I think we have limited options. Will discuss soon with his primary.