My dad is 82, has a rectal tumor. He didn't want to get a colostomy bag and infusion chemo, so he only went through chemo pills and radiation.
Since last May physically he's been getting worse, and his mind is getting bad. He fell a lot at the beginning of the year, so he had to stop going outside to feed the horses, and I installed a motion sensor detector so I knew when he got up at night.
For six weeks he's felt the urge to pee so much that sometimes I'd go with him to the bathroom 20 times a night. Finally last week I took him to the ER. They kept him there for two days. The CT scan detected inflammation in his bladder and suggested prostatitis. They also took a culture of his urine and found he had a UTI.
The entire time dad was really stressed out. My brother wanted a priest to come to pray for him but dad interpreted that as last rites and went crazy. It was very exhausting for him.
We have an antibiotic to take, and I'm hoping that is the answer to the nightly trips. The doctor in the ER said it was the tumor pressing on the bladder but the CT scan said nothing like that.
Yesterday his body got worse. I don't know if it's because he's getting weaker or the stress from the 2 day trip to the ER, but he couldn't get up out of bed and walk to the bathroom. He couldn't get in the wheelchair for me to take him. He was permanently stooped over. I spent all night cleaning him up and trying to change him. He did end up sleeping a lot and today is a little better. We almost made it to the bathroom and he was able to eat.
(note: we have a hand urinal he won't use and in the ER he tried to pull out the catheter)
I have been doing this for 3 years. I cried and apologized to dad when he was in the ER because it was terrifying for him. Yet I am literally beyond burned out. I occasionally get very angry and resentful of him, and I'm trapped at home. I have all the groceries delivered. We don't have running water so I have to go out to do laundry but I can't do that anymore. I spend most of my time sitting in a chair and monitoring him.
Taking dad to a home would be incredibly expensive, but it could be done. But it is dad's worst nightmare. And frankly, aside from the tumor and weakness, his vitals are great. I'm hoping the UTI clears up and he's not so nutty and having to go to the bathroom every 1-2 hours at night.
But I'm basically a robot now. Worst is I reached out to my aunt a month ago for help, which she was ready to do, but the day she was supposed to watch dad she got a kidney stone. My little brother works 12 hours a day and has kidney stones, and my twin brother wants to help very badly but he's a tax accountant and this is tax season, he's working 80 hours a week.
I don't know where to start with getting him into a home, though I imagine it's with a referral. But I can't take dad anywhere for a visit. For example, the squad had to pick him up and take him home from the ER.
Everyone tells me about hospice, which is great, but I do most of what hospice does. Unless he can't walk at all, I can do this. It's just the bathroom at night, all night that gets me. I haven't slept in 6 weeks.
Should I seriously think about a home? And do you think the UTI is making him feel the urge to pee so much? Thanks.
I know how f*****g hard it is to be the only one. I had no help and worked a full time, demanding job. I know the feeling of "someone's got to do it." People like us don't give up easy. I wish someone had told me what to expect! Nobody did... until the Hospice nurse came.
I also hate asking anyone for help. People dodged me, as I saw my strong man turn into a weak kitten...so upsetting. Making it to 82+ has been a long, incredible life for your Dad. He fed horses and raised a powerhouse son.
D has wanted to be walked to the bathroom 20 times a night to urinate, and the lack of sleep is a large part of OP’s problem. Male urinals are usually used in bed lying down, and for whatever reason D won’t or can’t do it. A sitting up (or standing with support) method would be a major improvement for both of them.
When my FIL had a UTI (in conjunction with prostate cancer) and was having trouble passing urine, his doctor prescribed Flomax along with the antibiotic to help facilitate the flow of urine, and it helped considerably with fully emptying his bladder. Maybe reach out to dad's doctor about that and see if it helps.
Good luck!
The UTI can also cause brain confusion. You might see some improvement in his brain after several days on the antibiotic.
Make sure to take all of the pills in the antibiotic prescription.
That means he can ‘go’ without having to stop driving. The road train drivers do the same, because slowing to a stop and then starting up again uses time and fuel. It’s a ‘blokey’ option that your (crazy) F might accept.
Thinking about it, this anatomical difference may be why women truckies are not too thick on the ground. Rats!
I am so terribly sorry. It is clear that Dad's bladder at night isn't allow you a bit of sleep to attempt recovery.
I wanted to let you know that if Dad had treatment they can actually cause inflammation of omentum AND bladder, especially if radiation was to colon area. They are closely related. As a lifelong sufferer from IBS (irritable bowel) some think it odd that my bladder acts inflammed when my bowel is. They are closely related. Leaky gut can cause inflammation in bladder as very odd as that sounds. It's a wild guess here, because he DID have a bladder infection, and that is likely number one cause. Enough on that. At this point it doesn't almost matter why he's up all night; it's unlikely to change.
Other thing is, you say that you can/are doing all that can be done and seem not to want/need hospice. While hospice is a long way from what it once was, it is at least SOMETHING and his bladder could be treated even while on hospice for comfort. Comfort care provided. Equipment such as bedside commode. Good hospital bed. Etc. Two baths a week (at least a couple of hours sleep for you during). Clergy. Social Worker. Guidance to get to get in whatever help. Pain relief.
This is a condition that is self limiting. It does sound like you are in the final days of stage IV.
You sound angry, overwhelmed, hopeless, grieving, in despair, self-critical, depressed. How could you NOT be. Sleep deprivation is listed as a TORTURE.
Whatever help we are trying to give here seems to be angering you. Anger is one way we avoid grief. You may blame the medical system, your dad himself, yourself, and all retired old RNs. You will thereby not have to sit down and cry your eyes out. But you can't put that off forever.
Mike, what you are doing isn't sustainable for much longer.
Trust me I am so sorry. I know that you cannot bear the thought of placing dad at the end and witnessing his despair. But at least do get in help from hospice; and help for yourself a few nights a week. You MUST sleep.
""Yesterday his body got worse. I don't know if it's because he's getting weaker or the stress from the 2 day trip to the ER, but he couldn't get up out of bed and walk to the bathroom.""
Warning:
Any antibiotic can cause a reaction, so if Dad's decline is rapid with onset of new symptoms or worsening symptoms, take him back to the E.R.
A missed UTI is not your fault. Medical professionals do not "think" a UTI diagnosis into a yes or no. It is a routine and cheap diagnosis to obtain for a scientific fact. I observed this neglect in an elderly man in his 90's, and finally, the HMO admitted they do not test/treat for UTI. um, for real.
And, untoward behaviors do accompany UTI in the elderly, it is a known fact.
You have a 'palliative' care doctor, so check in! Be sure you are on the same path and in agreement with Dad's wishes-if he wants to be treated for a UTI, and that Dad may prefer not to be on a care plan that includes "no treatment" for sepsis. The medical care system has a attitude and an unspoken protocol for some cases even if they are not on hospice, but receiving palliative care. This is a big issue, so as you are able, find out. I don't want to scare you, but let you in on little known facts.
It sounds like you are on your own a bit. Especially from the E.R., he was sent home in an ambulance. You are not getting the help you need and deserve.
BTW, the ER is the "referral" you are looking for.
When Dad was in the E.R., I am guessing they did not 'admit' him into the hospital,
so some options for care were lacking. (Others know more about the ties to insurance coverages and the hospital admission.) It is with "hospital admission" that he can be referred to a SNF or other care facility. (Not sure). Sorry.
The experts here who have gone through this can be of invaluable help in getting Dad some help, even if at this time, you may have decided on only "comfort care".
I personally believe that treatment for a UTI is the better way to achieve comfort.
The options are untenable, imo.
You contact your Dad's oncologist and tell him/her you want your Dad assessed for hospice. You will need to research hospice facilities, and you can do this by joining Nextdoor.com and posting a ISO for Hospice facility recommendations. Nextdoor is a local non-anonymous intranet of your actual neighbors and near community.
I'm so sorry for how you and your Dad are suffering. May you receive clarity, wisdom and peace in your heart as you make decisions on this journey.
I lost my husband to Stage 4 colon cancer at the age of 33. I guarded him and took care of him, learning the hard way. We were young and in love, when he suddenly got violently sick and ended up in the ER. After CT scans and lymph node biopsies, we were told he had one year to live.
Being young and strong, the Doctors put serious effort into him. They seemed almost as upset as me. After an extensive surgery to remove all the cancer they could, he recovered quickly, to begun brutal chemo for 6 months. He had a port implanted in his chest to make it easier. It seemed to work at first, shrinking the tumors in his liver that remained after surgery they couldn't risk removing.
He was a devout Christian and believed God would save him. I live in the San Francisco Bay Area, so he even saw Patrick Swayze's oncologist at Stanford. I learned all I ever want to know about cancer. After a exhausting, emotional year, once that chemo stopped...the cancer took over within 3 months. I brought him home on Hospice and he lasted 9 days. My life as I knew it was destroyed.
In 2001, doctors didn't do colonoscopies on men under 50. Cancer is so dangerous because by the time it is discovered, it's usually too late. I understand how upset and tired you are. I couldn't leave my job since someone had to pay his medical. We are giving you advice the best we can, especially not sugar coating that advice. You are at Defcon 5, and things are going bad quickly. You may think you have it all under control, or can do better than a professional medical staff. It sounds like you have been very good with your Dad...so far.
I know facing the end is terrible. If Dad was in a hospice facility, all the hard work associated with keeping your Dad settled and out of pain is done, so you could have your brain freed up to be his emotional support, when he needs it most. You will always know you stepped up as his son and did what was best for him for over 3 years. That is something so incredibly brave, honorable and unselfish, that nobody can ever take from you, period.
Nobody wants to upset you, just help you see the forest for the trees. I wish someone had told me what to expect. I only wish you the best, because you truly deserve it.
I would seriously think about getting dad into a Skilled Nursing facility soon. There is no easy way to handle this situation now, with the cancer and the regrowth of the tumor. Elders with a few health issues often wind up snowballing.....they keep catching different illnesses back to back that they can no longer recover from. For my father it was one too many UTIs on top of a brain tumor that was growing and impeding his mobility. He went from being relatively ok to bedbound overnight, and dying 19 days later. His poor body just could not handle ANOTHER infection. He was already in Assisted Living and I brought hospice on board too. I was grateful for the amazing staff in AL who cared for him so beautifully, tbh. Hospice kept him medicated as needed, clean and comfortable. They also provided ME with counseling which was helpful.
You have to look out for yourself here too, Mike. Doing so much caregiving for so long is very hard on you, physically, mentally and emotionally. You need respite from this, and it's not a sign of weakness to admit it. You're w/o help right now, on a lifeboat with a leak in it. Please recognize that fact. You can go sit with dad in the SNF every day if you'd like, bring him snacks, read him news articles. But you can sleep all night in your own bed uninterrupted. Restorative and healing sleep that will help you restore your energy and vitality again. You deserve that, and to also know dad's in good hands at the SNF.
Take care and keep us updated.
I suggest you see an Elder Care attorney and a financial planner to discuss the finances of getting your dad a placement. You should be able to do this by zoom, although you may not want your dad to hear the discussion. It may be more feasible, financially, than you think. At least explore the options.
Likewise, you can research facilities online, and call the ones that look good to find out about availability. They might not be able to give you the cost until they assess your dad and his needs, but you can find out what is available. In some areas there are waiting lists, in other areas there is a good supply and they are eager for new residents.
You have done amazing care very generously and should take great pride in that. Getting him to a facility is not being defeatist and giving up, it is recognizing that your devoted care has gotten him this far and his needs have outstripped the ability of any one person to meet them.
One bit of advice I haven't seen on the forum lately is to "put on your own oxygen mask first" - if we push ourselves to hard and allow ourselves to burn out we can't give proper care or even feel compassion for our loved ones
Caregiving is exhausting! Having cancer is exhausting. You need full cooperation from Dad to continue, or need to have him placed in a skilled nursing facility. Cancer is not easy as it is, and if the tumor wasn't surgically removed, it's not going to end well. Dad has no immunity now, so he needs to be in a clean environment as top priority.
One person cannot handle all this pressure, especially without medical training and running water! He needs to be on Hospice at a facility....soon. No amount of special care from you will stop that cancer. He needs to have running water to keep himself SANITARY! That is why he got a UTI!
If you end up exhausted and sick, who will take care of him? He will end up in a nursing home anyway. Better to start getting his affairs in order and making arrangements now. Find the Social Worker at the hospital he went to. Have his cancer doctor refer him to hospice.
When your Dad gets some rest, you need to have a serious talk with him that you cannot continue like this. Your Dad refused surgery/colostomy bag, so he made the choice himself to allow that tumor to remain. Chemo pills and radiation don't work that great. You need your sleep, a break and he needs HELP from medical professionals. He knows he is approaching his end of life, so of course he's scared.
Being stubborn about using a urinal is ridiculous. No running water is UNSAFE and dangerous. His immunity is at rock bottom with cancer, so it is critical for constant handwashing, keeping his area clean from germs! You simply cannot be touching him without constant hand washing!! Dad is NOT SAFE at home whatsoever!
I'm sure the retired nurses here will chime in.
We have clean water. When I say not running I mean I have to manually turn it on because our pipes leak.
I'm sure the retired nurses will chime in here also. They know everything.
Yes he needs to be placed sooner than later, and he doesn't need to go visit these places as you and your brothers can go check them out and dad can view it online if need be.
His doctor, Senior Services and Area Agency on Aging should be able to assist in finding him the right place. And Medicaid can be applied for to help pay for it as well.
Plus if he needs to go back to the ER in the near future you can then at that point tell the hospital social worker that your dad can no longer return home as he is an unsafe discharge, and that you and your siblings can no longer care for him. They will then have to find the appropriate facility for your dad, where you can get back to just being his child and advocate and not his burned out and exhausted caregiver.
I wish you well in getting him placed soon.
You have tried and done your best, but home care can only work for so long until we need to find professionals to take care of our loved ones.
My husband is in a memory care facility. The company that owns it (a family company) also has their own hospice care company located on the premises. He is scheduled for once-a-week visits from his nurse but she has several other hospice patients in the same building, so she sees DH and speaks with him at least 5 times a week. By this time, she knows his issues very well, and more eyes on him means immediate relief if he's hurting or uncomfortable Please look for a similar situation for your dad. He'd be better off and you would too.
Your dad is not in any shape to call the shots anymore. Also, a place with no running water is not suitable for taking care of your dad. He must be kept clean, especially his rectal area. Otherwise you risk skin infections, from which sepsis could develop. That's more unnecessary pain, and you may not recognize the signs, plus he'd probably need a hospital visit. You are NOT qualified for this type of wound care. I hope you'll be diligent in learning about services now available to you.
As far as "needlessly suffering", I worked with his doctors for 6 weeks before I admitted him to the ER. We tried meds. The doctor, much more qualified than me, didn't think it was a UTI.
By the way, the hospice nurses that visited dad in the ER didn't think he had a UTI.
I am receptive to advice, and I appreciate your point about going to a home. But I won't take this kind of berating. The running water issue isn't my fault, it's my father's fault. And I am left trying to fix it.
Thanks for your input. Take care.
So yes, it was a mistake. I have involved my brothers the whole time, as I said their ability to help at the moment is impeded.
Other than that unless you take advantage of their 5 day respite period which you can do every couple of months or so, they really aren't much help as far as hands on help. And trust me I know, as my late husband was under their care for 22 months in our home. 99% of his care was still on me.