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).
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.
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.
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?
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.
You can work with a SW or Aging services on other options for in-home help.
Best -
Remember that you and your husband are the clients here, and your wishes prevail.
Best of luck with a difficult situation.
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.
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.
Wishing you peace as you continue on in your caregiving journey.