Follow
Share

My dad has had short term memory loss over the past 4-5 years. He was repeating conversational topics within a few minutes 5 years ago for example and it was extremely noticeable. However, he still knows who his family is and tries his best to be "modest" when toileting if I am around. The last three weeks he has become very weak in the legs and has fallen to the ground (soft falls- he brought himself down onto a soft surface slowly and luckily my mom was around too). He can no longer walk. When he stands to go to the bathroom in a container he is immediately out of breath when he lays back down. He has had a UTI on and off for the past year and it was successfully treated with antibiotics but is now back so it's being treated with a new antibiotic. It is heartbreaking to see him spend all of his time laying on the couch in a shallow sleep, barely eating anything (he does drink water). We are looking into getting 24/7 help in the house for them since my mom can't manage this all the time with her arthritis. He is 90 and she is 81.


He was never officially diagnosed with AD because his mental decline was pretty rapid at first and then stayed very stable for the past few years. He has refused bathing for more than 5 years (reluctantly bathes every two weeks with lots of help) but I think a lot of that has to do with his severe chronic back pain that never went away after prostate cancer radiation (which cured the cancer but left him with severe back pain when standing). He definitely has at least some form of dementia though because of the short term memory loss he's had for years now.


Is there any chance for him to regain strength and fight off this UTI or am I just witnessing his slow decline into leaving us? He is not in the greatest spirits with this UTI and I don't blame him, but we can't bear dragging him into the hospital unless it's truly pure agony and no relaxation at all for him. When I ask him if anything hurts or if he is uncomfortable he says he is ok, and generally asks for the blankets to be tucked in around him for warmth. With all the staffing challenges lately I'm very hesitant to go outside the home (and many people in medicine agree with me).

This question has been closed for answers. Ask a New Question.
Have you had hospice come in to evaluate your dads condition? He sounds like he is in pain. Do you have an oximeter to check his O2 and pulse? He might benefit from oxygen. With dementia it is sometimes difficult for them to correctly identify their own pain in words but there are visual clues.
Hospice can be a wonderful addition to his care team. Most people wait too long to contact them. They will help you keep dad comfortable and teach you how to identify problems.
I had a dear friend who died with Alzheimer’s. She had constant UTIs that required hospitalization several times before hospice was called in. It did not seem to affect her mobility until the very end. My DH aunt has dementia, no UTIs and she can no longer walk. She has been primarily bed bound going on two years now. Each patient is different it seems.
With hospice there will be no need to take him to the hospital. Give them a call and see what they advise.
Helpful Answer (2)
Report

Thank you for your response!! My husband is a primary care physician and his concern about hospice is that they will withhold his blood pressure meds and not treat his UTIs. I think it's regional- for some reason that seems to be his experience here. I check his O2 and pulse and blood pressure and they are pretty good although I agree he could probably benefit from O2. But again- would hospice see this as over and beyond "comfort" care? That is my hesitancy. I just worry that they will suddenly stop allowing for treatment outside of pain medicine... but if that is not the case I would definitely love to look into it! Thank you for that input. Best of luck to you and your DH aunt.
Helpful Answer (3)
Report
funkygrandma59 Dec 2022
My husband was under hospice care in our home for the last 22 months of his life and they didn't stop any of his medications(and he was on a lot of seizure medications along with others)and supplied his oxygen(as he was on it 24/7)all covered of course under his Medicare 100%.
They also supplied needed antibiotics when my husband had a UTI.
Hospice is about comfort care and withholding medications or letting someone suffer due to a UTI is not how they roll.
Please look into them and several of them if need be.
(3)
Report
See 7 more replies
Antibiotics can lead to more UTIs so he should be taking a probiotic 2 hours after taking his antibiotic because the antibiotic kills the good and bad bacteria.

It will be hard for him to regain his strength if he is not eating. Sadly I think you are witnessing his slow decline. Have you asked dad what he wants his end of life care to look like?
Helpful Answer (2)
Report
GermanShepMom Dec 2022
Thank you for the suggestion- that's a good idea about the probiotic. I will look into getting something for him. It might help him regain some appetite too if we can get his gut bacteria in better order. I stayed the night with him tonight and both he and my mom got extremely solid restful sleep for several 2 hour periods at a time which was great to see. I had given him Tylenol which I think helped him calm down and not be in general pain. Both my mom and I know my dad very well... he would never, ever want to be poked and prodded and in a hospital bed but he would just want to be as comfortable as he can be. We are looking into hospice. If he regains strength and gets better, great! I've learned so much about hospice, about how it's not a death sentence or euthanasia, it's just comfort end of life care and can be extended however long it needs to be.
(8)
Report
See 2 more replies
Neither of those are indications that the "end is near" , as you put it. Definitely get some help ASAP. Get help for yourself, too. The UTI can be treated, keep him warm as he suggests. But keep in mind you can do only so much, and do not feel guilty.
Helpful Answer (3)
Report
GermanShepMom Dec 2022
Thank you, we are looking into hospice today. We are definitely going to make sure that they will treat the UTI and not withhold that kind of basic treatment, just wanting to support him as best as we can without going into the hospital. He is the LAST person who would want to be there. He despises hospitals so I know this is best for him. Really appreciate the input on here!!
(3)
Report
I would be surprised if Hospice took away his bloodpressure medicine or antibiotics. The whole purpose of Hospice is comfort. Taking away b/p meds means a possible stroke. Taking away antibiotics could mean pain. Septis for sure. UTIs are very serious in men.

Probiotics are given with antibiotics to prevent yeast infections that come with using antibiotics. To help prevent UTIs a nurse on the forum recommends D-Mannose. I have read where it may clear it up too. My Mom was given a cranberry tablet/s and a probiotic every day to prevent her UTI from coming back. In the last year of her life, she had no UTIs. Was your Dad given a culture to pinpoint what bacteria was involved so the correct antibiotic can be given? My daughter, RN, says drs usually go with a broad spectrum anti-biotic which doesn't always work on certain bacteria.

UTIs can do a number on Dad. The radiation treatments could be causing the problem with his legs even years later. Have you taken him to the ER to have testing done? I know, husband is a PCP but maybe some testing to help rule out anything serious before calling in Hospice.

When u do call Hospice in, have someone with you, your husband would be good because he can ask the right questions. People tend to miss some things being said and nice to have another set of ears. Dads medications needed for his Hospice care gets paid by Medicare. Equipment needed for his care gets paid. Supplies like diapers gets paid. The Hospice Nurse orders everything needed. You get an aide. In my area you get them for about an hr for maybe 3x a week. There was an OP that said in her State an aide was provided for 4 hrs at a time. Say yes to an side and for as long as you can get one. This will give u some ME time. You can put Medicare Hospice in search and see what Dad is entitled to under Hospice care. The Nurse should be available 24/7 even though she will only be at the home a couple of times a week. You have a right to ask questions and have them answered.

Your father will be given Morphine for the pain and it helps with breathing. If he becomes anxious, he will be given medication for that. You will be on your own when a nurse or an aide is not there. If you feel you need more help with Dad, you will need to hire it. You will be shown by the Nurse what you can do when she is not there. Remember by bringing Hospice in, you and your family have excepted that these are Dads final days. Hospice is all about keeping the person comfortable during these days. That comfort may mean he sleeps alot so he feels no pain.
Helpful Answer (3)
Report
GermanShepMom Dec 2022
Thanks for the suggestions! Yes... we thought about going to the ER but the problem is that so much of what they would do even for testing is very uncomfortable. My husband did say though that if he started feeling overwhelmingly bloated and in discomfort that way we could go in to have a catheter done but again, he would like to avoid that if we can because it's not fun. At the moment we have hospice coming Sunday so we will see what they offer comfort wise. My main concern is to have a bed that he can't fall out of so easily- he keeps trying to get up to go to the bathroom and falls. We can't get a good culture because there is so much contamination with the samples we send in (it's very hard for him to get a clean catch) so we are just trying different antibiotics in the hopes that we can clear it up or at least keep it from becoming septic.
(1)
Report
Once Hospice comes in, your husband, as an MD himself, along with you and your mom, have the total right to refuse any plan of care that they want to implement. There are other ways to bring in help and if Hospice would withdraw any meds (we never did when I was a Hospice RN), just decline the service.

You can work with a SW or Aging services on other options for in-home help.

Best -
Helpful Answer (3)
Report
GermanShepMom Dec 2022
Oh man, my favorite people on earth are nurses! (my husband too- he has always said he trusts the experienced RNs on the floors far more than inexperienced MDs or CNPs) Angels among us :)
(2)
Report
See 1 more reply
Compare hospice with palliative care to find out which might work best for him.
Helpful Answer (3)
Report

My dad was acting this way when he was at the end of his life; short of breath, exhausted, and a nagging UTI that antibiotics would not clear up. He was 91 at the time. He became bed bound quickly one day, and passed 19 days later. Hospice was on board by then, fortunately, and kept him comfortable w/o 'withdrawing' meds like antibiotics, etc. Their goal is to keep him comfortable, not to antagonize him or your family by withholding meds or going against the family wishes. Make sure to make YOUR wishes known, and understand what you're signing up for BEFORE you do. And know that you can fire hospice at any time and take your DH back to the hospital for more treatment if that is what you'd like to do.

Remember that you and your husband are the clients here, and your wishes prevail.

Best of luck with a difficult situation.
Helpful Answer (5)
Report

Thank you all for the input and wisdom here. You have all given me so much useful info to consider and I even read somewhere on a board here that Wellness brand diapers are the best (so I've ordered those too). Luckily my parents saved for retirement and they have enough saved to pay for some in home help over and beyond hospice/nursing so we have brought in a few people to come stay and relieve my mom for several hours a week (and I go too). I just got back from getting my dad back onto the couch after he fell off again. It took me and the in home helper to get him back up on the couch but we did it. He was in good spirits when I left because we were joking around about all the funny things we used to do. He was belly laughing- legit enjoying himself. So I know that is at least good for his soul and overall physical health regardless of how long he has left.

At this point we want to avoid the hospital or ER... my husband is of the same belief as he knows the system well. We got hospice started and they will come Sunday! I guess my husband was worried that my mom would not emotionally handle the decision well but I explained it to her in a way that was not morbid or negative and actually she saw how it could be a huge positive for him and for everyone else. Comfort is so important and they are experts at that.

Do the hospice teams do IV's or would they just do medicines by mouth? He is still swallowing pills and I was able to give him Children's Advil for his generalized pain. Maybe they have liquid versions of things- still is not eating anything but he will accept water and liquids. He is going on 4 days now without food and doesn't seem to miss it at all even when people mention it.

Funny moment- when I was helping him with his medicines and giving him tissues to clear his throat etc. he said, "When did you become a doctor?" (He knew this was a joke.) He also kept saying, "You have always been such a good kid." I feel so lucky to have had a great relationship with my parents... I know this is not always the case and those families make my heart hurt for them. Thank you again everyone, love and blessings.
Helpful Answer (4)
Report
lealonnie1 Dec 2022
I've never seen hospice use IVs.........medicines are given orally. Some in the side of the cheek if swallowing becomes an issue. Lack of food is not a problem; don't force dad to eat when he doesn't want to. WE have a hard time thinking they 'need' to eat when they really don't. When the body is shutting down, the last thing it needs is food. Hard to deal with, I know. Hospice nurses will lead you thru all of this; don't be afraid to ask questions. Nothing morbid about any of this; CNAs come to help dad bathe or do a 'bed bath' 2x a week; he'll be given a hospital bed which makes life MUCH easier for the staff to attend to his needs; incontinence briefs and supplies are FREE with hospice and provided by them; it's all billed to Medicare so you shouldn't need to be buying any Wellness products. They even provide creams and lotions for your dad's care, along with chuck's, pads........they brought mom a special wheelchair that tilted backwards b/c she kept falling out of hers. When she became bedbound, they brought special supplies to prevent her from getting bedsores on the heels of her feet (waffle shoes), and a bolster pillow contraption to prevent her from falling out of bed *which worked a charm*. Hospice is like a team of angels, with the chaplain, the social worker, and other team members to help YOU as well as your husband, with grief counseling and getting through the whole process. It was a huge blessing to avoid the ER and all the waiting & the nonsense they put mom & I thru TOO many times in the past. And all for nothing, too.

It's good your dad is happy & in grand spirits; he is lucky to have you by his side during this time, too.

Sending you love and blessings as well. Best of luck.
(6)
Report
See 1 more reply
It’s so hard to know when the ‘end’ is.

Wishing you peace as you continue on in your caregiving journey.
Helpful Answer (2)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter