Elderly Adults Deserve Dignity:It's Not A Diaper, It's a Brief

This writing contains very personal information about bodily functions not always thought to be appropriate for "open" discussion.

As LBD advances, bodily functions including the ability to urinate and defecate are affected. As we age, these areas of elimination are often a concern and our experience with Lewy Body Dementia has been the advancements move from the ability to control, to occasional accidents to both areas emptying simultaneously while toileting to loss of continence and need to have the person changed frequently. However, these are not necessarily progressive with LBD and there can be swings in these abilities just as in behaviors and cognizance.

Unfortunately, at least in Missouri, the "rule of thumb" seems to be checking "every two hours" which means, at least in our facility, since no one records when they actually checked but it's left to the Aide to do and if there's a shift change, far more time can pass, two hours can often become four to six hours.

Why aren't records kept. After all, in public places, there can be a sign on the door of a Restroom showing when it was last checked but we can't seem to place a sign within a computer record for this purpose?

Seems to be an easy process in this computer age we live in and one far more capable of recording who's really doing their job to the point of what was found (notations on whether the person was taken physically to the toilet or had to be changed due to "incontinence" and how often this was happening; observations on appearance of rashes, etc; even possible UTI's caught earlier due to frequency, smell or other notations).

Let's also talk about the "indiscretion" with which "checking" for urination or defecation is done on the Elderly who are partly or fully incontinent.

Out in a public area, CNA walks over, asks the person if they've (your choice; all are used) wet/pooped/urinated/peed/etc. Then, they may stick their finger into the pants and pull them open to "see" what they can or feel what they can. Although, if they choose to wear a glove, which some do and some don't, I can't for the life of me figure out how they can determine wetness through a vinyl covered finger/hand. This isn't necessarily done by all but done by enough CNA's to cause questions about their training.

Same happens with injections for Diabetes.  Nurse (LPN) approaches dining table at dinner time with testing kit and takes blood sample from finger. Nurse returns for meds and goes back to table and asks or simply decides where injection should be. Last night, one resident said he wanted it in his stomach near his belly button so the LPN lifts his shirt and pulls aside his pants and injects him. He was seated at a table for four and this action was visible by everyone near by or who had adequate eyesight, including myself.

Dignity. Why are our Elderly treated as though their body isn't theirs alone any more?

LPN would say she "asked the resident and he gave permission".  Actually, she gave him no choices.

He needed the meds; he knew it; he also knew he might have to wait a long time and that could cause medical complications if he didn't do it "her way".

Medications given identifying what they're for and what they are as residents sit at the tables. Easier for the Nurses to ensure those people who get meds "before" or "with" or "after" meals are administered but what adherence to HIPPA is there if this practice is done "at the table" and not at the "medicine cart w computer" directly?

I've seen facility Dr's "examine" and talk about "medical problems" out in the open area where all can listen and hear. What rights of the residents are being upheld when Dr's don't follow HIPPA guidelines? This sets an example the Nurses follow and the general staff see as doing other "daily personal functions" allowing infractions of personal rights.

Mom went from taking care of her own toileting including the use of a pad with her regular pants to a pad with "paper" briefs to deconstructed "briefs" that require tabs to open and close for easier changing either at the toilet or while laying down.

DIAPERS AND POOP.  "Oh, XXXX, so much Poop. So, so much Poop today. When will it stop, XXXX?  Oh, my. You just can't seem to make it stop, can you XXXX?  So sad, XXXX."

How would you feel if you had even the slightest ability to comprehend this dialogue about you, your ability or lack of ability? 

With LBD, comprehension and cognizance continually vary and at any moment, the brain can input and retain and even evaluate to some degree what is being said or done.

That's the greatest challenge, in my opinion, about this devastating and fatal disease, Lewy Body Dementia -- the great variances in cognition and reasoning. The loss of physical controls while the brain continues to make mental processing possible although on varying levels of complete and clear communication.

COMPASSION AND DIGNITY.  As a society, we've somewhat learned even the smallest infant deserves to be treated with compassion and dignity.

As they grow and certain behaviors, like modesty, are taught and practiced, many are retained even when other losses are experienced.

With our Elderly, we expect they will "accept" and "allow" with Dementia ways of being handled and treated they would not without the disease -- or that's the summation of observations.

As we travel this road, I see many similarities between the very young and the very old (meaning those with developmental challenges as Dementia affects). With the young, areas of their brain are not yet developed; with the old, those areas of the brain may have been developed but now are somehow "blocked" or "removed" depending on the type of Dementia they experience.

Consider the differences between a caregiver for a child changing their "diaper" and a caregiver for an elderly person in a facility (or home).

There are many childcare manuals and books for Parents on children and a great deal of study on forming and dealing with behaviours and challenges; can anyone recommend books on these subjects for the Elderly with Dementia? Certainly not the "movement" started by Dr Spock and turned into many specialties and professions -- for the elderly versus for children.

We pay a great deal of attention to our children and minimal attention to our Elderly. Why?  Do not those who have provided for us and created our society not deserve more than "shelving"?

How would you feel if someone "on a schedule" took you out of your chair or wheelchair, laid you on a bed and proceeded to pull off your pants and then the only remaining covering of your body, paper briefs and physically spread your legs apart to "clean you".

Yes, this is needed but you're not dealing with an infant and even as a baby grows, the wise parent/caregiver understands the need to verbally communicate with the infant/toddler about what they're doing or need to do.

Yes, the LBD adult may not comprehend and may emotionally react because that's the level at which they're momentarily functioning but the caregiver needs to understand where the resident/recipient of the caregiving is and at least try to spend a few moments reassuring the person by using Compassion and Dignity in providing a necessary service.

HANDS.  Are for more than providing needed services, they provide care and express concern. Touch is a basic human need. If all you do is "clean up" or "wipe away" or "eliminate" and do not provide attention, concern, focus on them, they will react rather than work with and become more "hostile", "aggressive" and "attack".

Dementia often removes facial and voice recognition for many elderly but I've noticed TONE OF VOICE and CHOICE OF WORDS can be instruments of calming, soothing, establishing trust. It's interesting how even when Mom is in a "severity" of loss of ability which we're noticing more frequently now, she can respond positively or negatively depending on how she is physically and vocally approached and worked with.

I believe LBD has been hidden far too long behind the closed doors of nonrecognition BECAUSE we do not talk about all the symptoms and all the challenges along the way.

Mom didn't transfer into Final Stage suddenly or overnight. In fact, there are times even today when she could appear to be in the initial stage of the Final Stage and times when we're concerned we have only days or even hours left with her.

This, I believe, as I continue to write this Blog is part of the purpose of sharing our life with others. The ability to see, as it happens, how variable Lewy Body Dementia is and what concerns and challenges arise along the way.

Take what you need. Use what helps you. Give back through adding comments about your experiences. We welcome the sharing, the caring and the ability to take others beyond the closed doors of a devastating fatal disease now seen as being in epidemic proportions, Dementia, and Lewy Body Dementia receiving the acknowledgement and medical awareness this roller coaster family challenger provides all who come in contact. Walk alongside us. Talk with and to us. We're all headed in the same direction towards the unknown and what lies ahead for us and our loved ones.

Lewy Body Dementia's Advancing; What Are The Right Choices? Part 1

I saw it happening. Didn't want to believe it. Believed it. Shared with family. Can face when not facing Mom.

Her passage into the final stage of Lewy Body Dementia was like all other stages -- slow at first, highlighted by major changes, not always visible and often seeming to reverse. Even now we're not certain how far into this stage she's travelled.

Are we seeing the "new stage" when it begins? I think we're seeing it when we're really into it because the changes are more noticeable and seem to be more prevalent.

How far along are we on this journey with Mom?  Are we really slipping into the final final stages?  SNC Nurse Manager called and said she thought Mom was ready for Hospice. I haven't cried for a long time, not even since my husband's death have I really sat down and tears have flowed without any ability to stop them. I started to cry but since I was at work, I hid the tears until I could be alone.

We were unable to visit for two days and when we arrived, Mom was slumped over almost falling out of her wheelchair. I'd seen other residents this way. She couldn't communicate. Just two days had passed; she wasn't communicating as much, but she was talking before. She was eating or could be encouraged to eat; she even held and was able to finish both pieces of an egg salad sandwich.

Now she looks as though she's lost at least twenty pounds; why didn't I see this extensive weight loss? Was it because her clothes are the size they are? Some blame goes to the Nurse Manager who said Mom was holding at the same weight she'd been for so long just a few weeks ago.

Could Mom have lost that much weight without our seeing it happen? Yes, we'd both been busy and I now had a full time job and my daughter had a very busy part time job so we weren't stopping by every day. She was eating and we were always told she ate well even when we weren't there to feed her (at times when she slipped into this behavior) or encourage her to eat (when she could hand feed herself even if it meant picking up food meant to be eaten with a utensil, it was good to see her have this ability).

Hospice. It's such a final step. No matter what they tell you about people going "off" Hospice.....at Mom's age, this is most probably not going to happen. I don't like the limitations. If we accept Hospice we can't take her or send her to the hospital for an infection.

Mom and so many others have had UTI's.

I see UTI's as not something that has to be a part of growing older and incontinence. Am I being realistic?

If those who are responsible for her care checked her more frequently and didn't let her sit in her excrement or urine, I don't think UTI's would be so frequent. I see how short staffed they are; I hear the men and women beg for someone to take care of their needs. I hear an LPN tell someone to "be quiet" and "I'll get to you". Twenty minutes later she's still distributing medications and no one has helped the person who called out.

If Mom's Caregivers at the SNC really watched her as closely as we always did, they'd see the changes, catch the eye infections and other infections. Most of all, they'd monitor her illnesses/infections as a medical facility, which in Missouri a Skilled Nursing Center is, should and alert the Dr in charge the medication did not work.

We can't not help her. Mom's wishes have always been to seek medical help for infections. We'll make the decision and take her to the hospital -- even though she'd just been about ten days ago.

I'm walking the road with Mom and I'm not that far behind even though Mom had me later in life. I'm afraid for her. I'm afraid for me. I'm afraid for you.