Interested in how other caregivers survive

Posted by alone @alone, Oct 1, 2023

Need to know how others in my situation function. Toilet accidents, memory etc.

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@jeanadair123

My husband is 85 and I am 76. If I think back to 2020 I can see very slow changes. He has never been diagnosed other than I think he has mild cognitive I have recently seen more changes. I find that I have to be two steps ahead all the time which is exhausting. We don’t have any family. The changes I see are probably minor like washing hands after using the bathroom, putting the garbage in the wrong bin etc. this may seem minor but mentioning washing his hands seems to end in an argument. A lot of the things he does I don’t even mention that way we can have a nice day. The toilet issue is a big concern to me. My girlfriend said when he says something just say okay it works most of the time. He doesn’t wear his hearing aids either. I feel I am agreeing so much with him to have a happy life that I am losing me along the way. I go for coffee with my girlfriends occasionally and the other day decided I needed a massage, that was bliss. My stomach is upset most of the time. How does one get a grip on this?
I called a non profit caregiver group and they sent me a package and said they will check in with me every 6 months. I think he is aware of his forgetfulness but we have never discussed it. Any input would be appreciated?
Thanks, Jean

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This is just a minor suggestion, but maybe you can have hand-wipes handy so he can use those after using the toilet. If he doesn't wipe them, maybe you could grab one and wipe his hands quickly?

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I have noticed lately that he is washing his hands or he says so. I have watched and he has been doing it. But maybe hand wipes might be a good idea also. Thanks.

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@jeanadair123

I have noticed lately that he is washing his hands or he says so. I have watched and he has been doing it. But maybe hand wipes might be a good idea also. Thanks.

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Too much use of handy wipes can damage hands! Maybe in addition but not Number one defense. My hands are hugely damaged from exsessive use of wipes during Covid!

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@becsbuddy

@guate I can only imagine how difficult this must be for you. And missing appointments must really be difficult. Have you thought about talking with the doctor about having virtual appointments? Your wife wouldn't have to move anywhere but you’d still have the appointment. Just ask the office where she sees her doctor.
Do you have anyone who helps you? Or a way to get out of the house occasionally? Your health is so important!
Have you found any caregiver support groups in your area?
Let me know if you think the idea of virtual appointments could work!

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Hello Becky, thanks for your response and comments. Yes, we have been able to handle the appointments better by phone when it is feasible. Thanks

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@becsbuddy

@alone Welcome to Mayo Clinic Connect! You’ve come to the right place. There are many members in your same situation and I’m sure they would be glad to share tips and how they cope.
https://connect.mayoclinic.org/discussion/new-to-this-discussion-group-1/
Maybe this website will give you some help while we wait for members to jump in.
https://www.powerfultoolsforcaregivers.org/
But first, maybe you can tell us a little more about your situation. Who are you a caregiver for and for long? What are your specific frustrations besides toileting and memory?

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My husband has advanced Parkinsons. I've been caregiving for 2 yrs but, now that our insurance has kicked in, have help 4 hrs a day, five days a week. Very helpful! As others have said, it's been painful to see my independent, get-things-done husband gradually become helpless. But he's 87 so here we are... Hospice has been wonderful-recommend it! Our biggest hurdle, urinary frequency with accidents, was largely taken care of by using a condom catheter. No longer do I get up at night with him. Next hurdle: how to become Amazon woman to handle those sometimes difficult transfers without hurting my back or shoulders. So far, we've been lucky but it's concerning. Other than being careful with posture, are there any suggestions out there?

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@maryrob

My husband has advanced Parkinsons. I've been caregiving for 2 yrs but, now that our insurance has kicked in, have help 4 hrs a day, five days a week. Very helpful! As others have said, it's been painful to see my independent, get-things-done husband gradually become helpless. But he's 87 so here we are... Hospice has been wonderful-recommend it! Our biggest hurdle, urinary frequency with accidents, was largely taken care of by using a condom catheter. No longer do I get up at night with him. Next hurdle: how to become Amazon woman to handle those sometimes difficult transfers without hurting my back or shoulders. So far, we've been lucky but it's concerning. Other than being careful with posture, are there any suggestions out there?

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Yes there are different strategies to help with transfers. Occupational Therapy can help teach you and your husband techniques and helpful devices (installing hand rails). OT and PT was a great help when I needed to learn how to properly transfer my husband post surgery

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My parents are no longer able to take out the trash like they used to. They both have significant mobility issues with my mom also having severe bladder incontinence. My dad has congestive heart failure, CKD and Alzheimer’s. My mom wears pullups occasionally and pads everyday. My dad just started wearung a pullup at night. She claims she constantly leaks urine. Is this possible? She has consulted with her primary and a urologist, who did cystoscope and found nothing out of place and no reason for her incontinence. Maybe, things have changed since then. Idk. But, even if someone used incontinence products around the clock (I know she still urinates in toilet too.), how much product would they accumulate ? Wouldn’t the bladder eventually empty?

I cannot understand the enormous amount of trash that leaves the house each day! They have a pickup trash service that retrieves a 95 gallon bin from the street once a week. It is always stuffed full. The pickup is Fridays and by Saturday afternoon, the bin is almost full again! It’s ridiculous. I also get repeated requests for more and more toilet paper and paper towels! Where does it go? I cannot figure it out.

Any insight on this type of situation would be appreciated. I’m having to drive to a drop off location everyday with bags of trash. It makes no sense.

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@celia16

My parents are no longer able to take out the trash like they used to. They both have significant mobility issues with my mom also having severe bladder incontinence. My dad has congestive heart failure, CKD and Alzheimer’s. My mom wears pullups occasionally and pads everyday. My dad just started wearung a pullup at night. She claims she constantly leaks urine. Is this possible? She has consulted with her primary and a urologist, who did cystoscope and found nothing out of place and no reason for her incontinence. Maybe, things have changed since then. Idk. But, even if someone used incontinence products around the clock (I know she still urinates in toilet too.), how much product would they accumulate ? Wouldn’t the bladder eventually empty?

I cannot understand the enormous amount of trash that leaves the house each day! They have a pickup trash service that retrieves a 95 gallon bin from the street once a week. It is always stuffed full. The pickup is Fridays and by Saturday afternoon, the bin is almost full again! It’s ridiculous. I also get repeated requests for more and more toilet paper and paper towels! Where does it go? I cannot figure it out.

Any insight on this type of situation would be appreciated. I’m having to drive to a drop off location everyday with bags of trash. It makes no sense.

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Are you on her paperwork as a POA for medical stuff and on the HIPPA release at all the doctor's offices? Yes, women have been given short shrift in addressing the urinary incontinence, often seeing male doctors trained by malemptying doctors, on male patients.
My mom had leakage issues (7 pregnancies, 6 live births) and likely had pelvic organ prolapse issues, and no pelvic muscle tone left.
She was taking 2 urologist prescribed meds (the names escape me) One was an a.m. dose of a diuretic, to help her release/relieve/empty her bladder during the day. The other was prescribed for bedtime use, to help her keep dry. She (college educated, lab scientist) did not read or retain the information from the package inserts so she was taking both meds at the same time of day. No way they would work as prescribed--they were in direct competition with each other.
The other thing with women, as our reproductive hormones are responsible for so many functions, is that we can develop genito-urinary syndrome of menopause. It used to be called "vaginal atrophy" Essentially, as estrogen hormone levels drop the tissues of the vulva, and vagina, aren't maintained in the same robust manner and especially as we age, that can irritate and exacerbate the urethra (the tube from the bladder to outside the body) Now they recommend all women use external estradiol (cream or suppository) til the end of life, so those tissues can be maintained in a healthier manner.
You could try to find a uro-gynecologist for her care--to have someone who specializes in womens health in the genito-urinary system.

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@terry1976

Are you on her paperwork as a POA for medical stuff and on the HIPPA release at all the doctor's offices? Yes, women have been given short shrift in addressing the urinary incontinence, often seeing male doctors trained by malemptying doctors, on male patients.
My mom had leakage issues (7 pregnancies, 6 live births) and likely had pelvic organ prolapse issues, and no pelvic muscle tone left.
She was taking 2 urologist prescribed meds (the names escape me) One was an a.m. dose of a diuretic, to help her release/relieve/empty her bladder during the day. The other was prescribed for bedtime use, to help her keep dry. She (college educated, lab scientist) did not read or retain the information from the package inserts so she was taking both meds at the same time of day. No way they would work as prescribed--they were in direct competition with each other.
The other thing with women, as our reproductive hormones are responsible for so many functions, is that we can develop genito-urinary syndrome of menopause. It used to be called "vaginal atrophy" Essentially, as estrogen hormone levels drop the tissues of the vulva, and vagina, aren't maintained in the same robust manner and especially as we age, that can irritate and exacerbate the urethra (the tube from the bladder to outside the body) Now they recommend all women use external estradiol (cream or suppository) til the end of life, so those tissues can be maintained in a healthier manner.
You could try to find a uro-gynecologist for her care--to have someone who specializes in womens health in the genito-urinary system.

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Thanks for your comments. I am HCPOA and on release forms. I did get her to a female gynecologist a few months ago, but my mom didn’t like her and won’t go back. Trying to find another one. They were not sensitive about her having to get up on the exam table. Not everyone is spry like a 20 year old. Anyway, I didn’t get a chance to speak with her…long story.

My mom has medication anxiety and it’s almost impossible to get her to take meds. I’ve begged her to get prescription for Estradiol, but she refuses. I use it and am glad I discovered it. It’s a shame how women’s health is treated or not treated.

I read somewhere that a woman would need 6 depends a day if fully incontinent and she must be doing much more. That’s why I’m so curious.

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Hi My Dear Mayo Community and especially Alone - Just when I thought I had said all I had to say, I am back. My mantra has been to plan ahead if possible. With that in mind, the carpeting in a bathroom in the laundry area has been removed and replaced with tile. Two of three utility closets have been painted by dear Kayla. One closet has been fully organized, but one is still in mayhem. Then, the plan exploded. On Sunday, there was a visit to urgent care -- blood in the urine, blood in the bed, blood on the T-shirt. Meds for an UTI and instructions to follow up with our family doctor. Of course, everytime something like this happens we are reminded that the cancer that has remained dormant is still there. But, no pain until the middle of the following night. A 6:30 a.m. visit to the Emergency Room. Tests, a morphine shot and different drugs. It just might be a UTI and not the cancer breaking through. Today, it is as if it did not happen.. He does not remember the blood in the urine or the pain which he said in emergency was at a 9 but declined drugs in the next breath because he didn't think he needed them. Tomorrow a follow up visit with a doctor. -- Still the closets need to be contained because his daughter is coming for a visit next week. I think the hardest lesson learned is that somehow I have to get back to where normal resides. And I will. I am fully trained after 10 years of riding the seesaw of dementia combined with cancer. -- Take heart Alone. The one thing you are not is alone. Use this forum for information and for companionship. The support here is genuine and heartfelt. GloRo

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