Correction-dementia and uterine prolapse but does hyst help at all with later years

Hi chickenfeet - Putting a frail elderly woman with dementia through the experience of a hysterectomy seems like a bad idea for lots of reasons. For all the reasons that hyst is a bad idea, plus, you might be jeopardizing what remaining mobility she has. Just how bad is this uterine prolapse, that you would consider removing the uterus? And have you researched hysterectomy? - Surviving

Hi Chickenfeet

Bette Davis once said, "Old age is for sissies." How right she was.

When a woman has dementia her ability to make all sorts of decisions declines, and from my experience, health and illness decisions are made (in Australia anyway) by considering the woman, her family, her carers and her health professionals, and how particular decisions will impact primarily on the woman concerned, but also what her loved ones would judge that she would want if she had the capacity to, but also tempered by the impact of different options on the ongoing health or illness and how easily managed the outcomes of the different options would be, by carers and nurses. If the person is mobile, as many are in the early and mid-stages of dementia, the woman may or may not have Whole Woman principles embedded in her muscle memory. No doubt a woman with dementia and a severe prolapse would suffer the same prolapse management difficulties as a woman who has all her faculties, except that she might be less likely to care for herself well, and may not be very communicative as to her needs. There is also the ongoing wound management issues if ulcers are present, particularly if the woman becomes incontinent of stool and or urine. It is not pleasant to consider the possibilities but it is something that we need to be aware of, as many of us will live to a ripe old age. If we don't have to be involved in the decisionmaking on behalf of our mothers or other female relatives we may be in the position of having others make decisions on our behalf, if we end up with dementia.

So while we still have our marbles we need to educate our families about what we would want for ourselves if we are found to have dementia and look like living a long time with severe prolapse.

Among the side effects of prolapse repair and hysterectomy surgery are further prolapse, difficulties with emptying bowels and bladder, and pain and discomfort, sometimes extreme enough to rob a woman of her mobility, ie she may not be able to walk unaided, ever again. Yes, you read that right. The chances might not be great, but if you inadvertently agree to certain procedures, not knowing the full pros and cons, drawing the short straw can turn out to be a ticket to chronic pain, use of a walking aid before she might otherwise need one, or a full time wheelchair and chronic pain for the rest of her life. That is, if she comes through the trauma of surgery and recovery OK, and doesn't have such a setback that she has little quality of life left after the surgery.

Knowing what I know about:-
- POP,
- doctors' reticence about giving all the information needed for a woman to make a fully- informed decision about consenting to surgery,
- and the corollary, the difficulty of knowing what questions to ask the doctor and care Staff, as a family member,
- possible side effects and complications of surgery,
- the effects of dementia on my own mother, who doesn't have POP (that I know of),
- the high degree of care she requires, regardless of any prolapse,
- the fact that doctors are the ultimate authority (aside from family) in nursing homes n Australia, and have no tools other than pessaries and surgery, for managing POP, ie other therapists can only treat a Resident if the doctor prescribes it,

I wouldn't consent to an hysterectomy for treatment of POP without an enormous amount of and wringing and consideration of the pros and cons. For my mother who is 101, all I ask is that they feed her, keep her comfortable and clean, tend her wounds, and be kind to her. She is full time in a wheel chair anyway, and I think an operation would make her even more of an invalid, but she is tough, so I doubt that it would kill her. An hysterectomy in her case would simply mean mutilation and pain, and maybe eliminate some toileting difficulties, and maybe make her day to day care simpler.
I'll have to find out from my Mum's nursing home about how they manage advanced POP in their Residents. If you are in the position of being a decision maker for a woman with pelvic organ prolapse I suggest that you familiarise yourself with the care she will need from you in future years, and how it is managed in any nursing home you are looking at. If you know what you, she and her carers are dealing with POP-wise , and don't be put off by the TMI factor, or Staff who are not keen to discuss it, you will all make better decisions on behalf of the woman with dementia. Often, Staff will initially not want to talk to family about the care of their loved one, because they are personally aware of the TMI factor. Talking about POP and dementia is not easy for anyone, but if you can assure them that you know something about POP, and will not faint with shock when the word 'vagina' is used, they will probably be relieved that they don't have make these decisions by themselves, and that there are family who actually care about what happens to their loved one and are not scared of reality.

That's just what I would do. I think it is up to every family member, particularly the women, to have frank conversations with the elderly woman with prolapse, and do a lot of research to find out what normally happens, and how it is managed by care staff, before consenting to any surgical procedure on an elderly woman. That way, if you consent on her behalf, there will be no regrets if it turns out badly for the woman concerned. Ask yourself, what is to be gained by having surgery at that age. Your answer might be different from mine.

Hope this is some help, and may prompt others to put in their tuppence halfpenny from their own experiences.

Long live Bette Davis!

Louise

You know, in all the years I worked in the nursing homes, I only saw 1 case of pop. Of course, I didn't know what pop was until I actually got it myself. This lady had a very severe bladder prolapse that bulged at the opening of her vagina, and when we toileted her, we were told to be careful wiping around it and applied a barrier cream to keep it moist. That was it! I had ladies up in slings for all the world to see and nothing ever hung out that I was aware of. Most of the people I cared for were incontinent, and we just made sure they were as clean as possible, and applied the creams to keep them from getting any skin problems.
I have to wonder if the inactivity is what actually keeps the pop less obvious?

Well, they're not really over-exerting themselves at that age, are they, Aging? You could be right about that. And thankyou for reporting on the very normal way that POP is cared for in the nursing home you worked in. How very normal it all is!

Why would they offer a hysterectomy? Because they can.

Louise

I never heard of any elderly women getting hysterectomies, but there were several that came in after hip surgeries. Some recuperated just fine, others were never the same. The elderly are hardier than we think, but even they can only take so much invasiveness, just as any of the rest of us.

Yes, I can imagine them coming in after hip surgery, possibly because their loved ones could no longer handle the lifting, etc. Yes, it is amazing the way some bounce back and others simply fade away, defeated by surgery. My grandmother had a stroke in her late 70's, a kidney removed in her mid 80's after falling off the back of the sofa, trying to adjust a curtain (sigh), a broken arm in her early 90's, and hip surgery after a fracture at 98 years of age. She didn't walk again independently after the pinning but she was almost 104 when she finally passed away. Tough little cookie she was!

I really think it has to come down to, "What is the best for the woman?" "What will be better for her after the operation?"

Thanks for making this important point, Louise. Like you, I am post-meno with an elderly mother. And even if the younger ones can't or don't want to think about this, you and I can certainly relate: Get this posture embedded into your muscle memory now, while you still have all your mental powers to help you do it! Just one of many reasons to take the long view of this work. - Surviving

:-)

you ladies here though what I have to say is largely covered already by Louised and Graceful, just some reinforcement. My mum had uterine prolapse and had it stitched at roughly aged 40 and went about as previously. In her middle 80s she had some of her intestine removed because of diverticulitis, this unfortunately unthreaded her uterus. Uti was back, but mum was not really active now and so it did not seem to bother her all that much, but she did get very dry down there and things would have been kinder on her if she had had some regular lubrication. She became quite ill with pulmonary edema and her memory had deteriorated so I ultimately placed her in a hostel. One of those walkers with a seat was ideal for her getting around and she was never incontinent, so it wasn’t too bad, but if I had known then what I know now, it could have been better.

That is the kicker of it, isn't it Fab. Wish I had known...
I can say, at least for the nursing homes I worked in(I know there are many terrible ones out there) skin care was the one aspect we payed the utmost attention to. If the state went through and found bedsores, we were in trouble! We used to get ladies in that had flaming red vulvas with peeling skin and gross yellow curdy looking stuff all over. It was heartbreaking to see! But, in no time at all, by keeping them clean, dry, and lubricated as needed, they were pink and perfect again. One of the best things we did was let them to air at night with a pillow between their legs.
I wish all daughters knew what I know about those details anyway, because I feel I am going to be the best advocate for my own mother when that time comes, just as we are all advocates for pop now.

The universities here are disbanding their women studies courses. These courses concentrated on aspects of the history of women and their struggle for equality and all of that which is of course important, but how better it might have been if these courses also included women folk knowledge which of course is denigrating this expertise possibly by calling it that but what I mean is the expert knowledge like you yourself have gained through working at your profession and the witness knowledge that Louised and Surviving and myself have seen in our mothers and shared here. How good it would be to gather that into a body of knowledge so that anyone working in fields dealing with the care of women can access it readily without the evidenced scientific/anecdote divide.

Yes!!! That would be the most ideal! I hope someone does it as Christine has done for us here!
I sometimes feel guilty for knowing the things I do and not being able to share them with a broader audience about the elderly and these important issues brought up here. Thank you Fab, you always add such clarity.

if you have any thoughts on this Graceful but I'm canvassing them if you do. When my mother had her first bout of pulmonary edema, the whole upset did affect her memory ( which was going anyway, but it is very hard to know the chicken and the egg, because stress is so often involved in forgetting even for the healthiest of us), but when I brought her home I made an effort, and so did my husband, that whenever she asked what had happened and 'what is that tablet you are giving me meant to do?' to explain to her fully as we possibly could, to reassure her and tell her that after such a traumatic experience it would be natural to forget. Our idea was to not only to prevent her getting upset but that keeping on bringing the subject foremost into her immediate memory would ultimately bring it lastingly into her long term memory. Just a made up theory, but it did seem to help. She did seem to start to remember even if all she was remembering was what we told her rather than the actual event itself. I did not think it would matter particularly, as long as we were trustworthy of course.

The more experienced ladies will probably have better answers for you, but all I am saying from my perspective from actually working with the elderly, I didn't see anything coming out. They probably were symptomatic; after all, most had bowel and bladder issues that we had to address, I just didn't know, not being educated about pop, that is actually what probably caused these issues in the first place. My comments about inactivity is just speculation on my part.

The stitching was an old operation (1958) which my mother had and which was not very pleasant and which is not done nowadays as far as I know, but you could check on that, but I would not recommend anyone having it done. It was very painful, I witnessed my mother's distress, and on top of that it was botched by an intern under the professor's guidance which left her stomach in a pretty awful state. But it did hold until the second operation on the diverticulosis 45 years later. I am definitely saying that a prolapse is better for a very old lady (86) who would be naturally less active because of other morbidity because of her inactivity where she knows nothing about WW and allied practices. I would not necessarily say that about one who was naturally active and able to take new information which really is life disturbing on board. It could have been better if I had realised the comfort that more regular lubrication of the vulva would have given her, the improvement of her toileting practice and the help of the right foods and supplements to help with stool as she had then the added burden of diverticulosis.
I hope this answers your questions.

We used a peri wash or baby shampoo, or just plain water after toileting and different nursing homes had different barrier creams and ointments. I did find, from my experience, that zinc based creams didn't work for elderly skin. It was so sticky and when we tried to wash it off skin came with it. Not pretty or comfortable.

coconut oil, olive oil, vitamin e cream or even vaseline, but the former ones are probably the better kinder ones to use regularly, although vaseline has been the lubricant of choice for decades. She will probably be able to apply these herself. Give her an array to choose from, that she can decide what she finds easiest to use and which suits her. If she cannot do it herself then try to introduce her carers into doing it as a regular daily washing routine. Washing every time she urinates is an understandable obsession because with uterine prolapse you are always aware of the dribble and the smell. If you can ask her to use the heel of her hand to return the uterus to its right position if it is outside of the vulva before she urinates this will help her lessen her need to wash and just gently dab with toilet paper. When urine first comes out it is sterile but I don't see the chances of it staying that way once it is exposed to the air.

Fab, I feel so sad about what happened to your mother. Loss of memory can be very hard on both the person and her caretaker. It sounds like you handled it very well. The one thing I got very used to was repeating myself, over and over again. Anything that keeps them calm, we would say it.

but please don't feel sad, she had a good, long life, and we both did our best and our love remained constant, but they are hard times we all go through, and yes you regret that you did not say more, but I realised ultimately that a lot is known and shared without having to say anything. It's when words desert us that they are probably best left unsaid.

You are probably right about that. Sometimes it seems we say too much, maybe just being there is really most important.

What a lovely thread this has turned into. It all comes down to love and kindness, doesn't it?

Keep up the responses.

Louise

I appreciate this discussion too. I am the primary caregiver for my 90-year-old mother. This is why I could not attend the conference this year, though it has been in my thoughts constantly and I wish someone would give us a shout-out from Albuquerque!!

I have recently started participating on a family caregiver support site. Just a few days ago someone posted a link for the website of Teepa Snow, an OT who specializes in dementia. Since then I think I have watched every video clip of her that there is. For anyone who deals on a daily basis with a frail elderly person, whether or not full-blown dementia is present, her presentations will give you a whole new perspective and more practical advice than you thought existed. She is mesmerizing. This lady has seen it all and knows whereof she speaks.

I also find this fascinating because my daughter is an OT student entering her final year. She is specializing in geriatrics and I am coming to realize what a wonderful choice she has made. I have been struggling in my role as caregiver and feel that between Teepa Snow and my own kid, I have a couple of good role models for getting through this with less stress, more joy, more love.

My mother had hyst at some point in her pre-menopausal years. i don't know exactly when and I don't know why. She has spoken all my life about bowel issues resulting from childbirth damage. I do not know what, and she is far beyond explaining everything to me now. I'm grateful after reading this thread, that she does not seem to have any of these problems, so far. She is still continent of bladder and bowel, and although for decades she has feared and taken precautions against bowel accidents, I don't believe she has had a single one in the nearly 3 years that I have been directly involved in her care.

Anyway thanks ladies for sharing all of this information. - Surviving

I was about 6 months into the Whole Woman work when my mother's problems began and I became a caregiver. I also work full-time and my youngest is still at home (well, once in awhile). At this point I had done the reading, but my body had not quite "gotten" the posture. it was not yet automatic and I experienced a setback that caused me to realize that I needed to devote a bigger effort to myself and my prolapse management. This is one of the reasons that I harp SO much on this forum about working working working until that posture is second nature. I know now, that whatever life throws my way from now on, my body will never go back to carrying itself the old way. - Surviving

Unless these words of yours were written by you we never would have known your experience. This is why it is so important for us to write of our own experiences, so that others can learn from them.

Aren't we lucky to have it. Thankyou Christine and Lanny

Yes, my mom was always slim and extremely weight-conscious her whole life. I doubt her diet was all that healthful, probably typical for her generation, and she was married and raised her family at a time when processed foods were beginning to play a major role in the diet. - Surviving

What I mean by up in a sling is that some women couldn't walk or bear weight on their legs anymore, so we had to use machines to lift them. These slings were attached to the machine and when we lifted them up for toileting etc. their bottoms were very exposed, and if anything could pop out it would have in this position. As I have said, I didn't know what pop was at the time, but I definetly would have noticed it from this viewpoint. I never even heard of a pessary until I found this site.
I am sure there are elderly women out there with extreme uterine prolapses that have to be attended to, I just did not see it during my time in the nursing homes. Wish I had known more about these things back then.

I just wanted to thank everyone involved in this thread. The love and concern pouring from every word is warming to my heart. I lost my mother very young and have sometimes fantasized about having her here with me and taking care of her. It may seem odd to some but I feel like I've been able to live through yalls loving and kind experiences. I feel very blessed to be a part of such a wonderful group of women. To all the women taking (or who have taken) care of their mothers, I am sure your mothers feel so blessed to have you. There is so much love here and it is so beautiful.

I am a very active 82 year old with an invalid husband and a mentally challenged daughter..I am scheduled for surgery in september to have my uterus removed and bladder suspended.. I am aprehensive to say the least as I have never had surgery before only a heart catherization..as I have a slight back flow which is managed with medication..My uterus can sometimes be held in my hand..I can go all day without going butat night I'm up 3 and 4 times.hense little sleep.I am somewhat depressed but I try to stay positive..I guess I just would like some feedback on what to
expect in the future..

Hi nala and welcome. What other options have you been offered? Has your doctor tried to fit you with a pessary? I agree that your prolapse is extreme, but hyst and bladder suspension are also quite extreme and very damaging. i can't tell you what to expect, only that you will most likely be trading one set of problems for another. Even a profound prolapse can generally be managed by a woman of any age who is active and in good general health and who is willing and able to put in the time and effort required. Please give us a little more history. - Surviving

Nala, I (70) have prolapse of the bladder and uterus and I also am at the stage where I can hold my pop in my hand. It is somewhat scary but at the moment I am doing without a pessary and certainly never want surgery. My friend started with a hysterectomy, bladder suspension, and is about to have her 8th or 9th surgery...I don't want to follow her path. She already had a surgery just few months back and is waiting for a call back.

The last few weeks my bulge is much larger than normal and I think it is because I have put on weight and am having a challenging time to drop it. I have been lax in doing the exercises due to a hectic summer so I have to smarten up to help myself. I go to the bathroom up to 5 times during the night and have become used to it so it is not a concern to me as many senior women without prolapse (and many men) do the same, so I figure it is more or less normal at a certain age. Since we are retired, we can always lie down during the day, if tired.

I would recommend that if you need to urinate but can't during the day, to lie down for a while so things move back in and perhaps you will be able to "go" just like at night. If you search this site, there are many posts on how to empty the bladder. If you cannot find them, I would be happy to tell you but at the moment I am in hurry.

I wish you the best-- please do a lot of reading on this site before you opt for surgery.

Surviving, I was fitted twice with a pessary but it was so painful I couldnt walk up or down stairs,wore it off and on for a month and then abandoned it,,My gyn says It won't kill me but I am not being fair to my husband who still wants sex and I am too embarassed to do it. I also have many uti'swhich completely take my energy .I guess I;m just getting tired of all the problems and want to get it over with. My great grandson says getting old is not for sissies He's right..Thanks for your input..

Nala most of us here have not had the operations you mention so we cannot speak of that, except to point out the obvious that it will take some time to recuperate and you would be better off avoiding too much lifting. As to the UTIs I really could not say for sure they are caused by your prolapse. If you are not urinating throughout the day, it is possible that stale urine is being retained in your bladder and is causing the UTI as in an older man with the same difficulty with prostrate. More frequently, a UTI in a woman is caused by bacteria infection and some women are prone to these just because of how women are built with their anus close to their vulva. If you have been treating them with antibiotics then they should have cleared up, but sometimes the infection can become low level ready to flare up again. Whatever the cause, it is possible to go on an extended course of a low dose antibiotic which is known to bring good results. So as osmari suggests, it is important for you to urinate more frequently and resting during the day could make this easier, or perhaps deliberately taking time to sit down and drink a glass of water which should go through you reasonably quickly. Having read through the site, you probably realise that we are all about posture and diet which excludes anything that irritates the bladder or makes defecation difficult as in constipation and diarrhoea. Your great grandson sounds wise for his years.

Hi Nala,
One of our ladies with severe prolapsed uterus made a garment to keep it in: https://wholewoman.com/forum/node/5123
I don't know what the recovery would be if you tried the whole woman way at your age, but having worked in the nursing homes with older people than you, I got to see people get therapy with various conditions, and recover very well. The older people I worked with were really a hardy bunch. I guess I am just hopeful that anything can happen, and wish you the best in whatever decision you make.