The struggle of preserving their dignity!

oehlsena

My LO is a dignified 70 year old lady who has been accomplished during her life. She always worked hard and raised two boys herself after being left by the father during pregnancy, and took the opportunity to go to college. She has been very strong and resilient. 

Unfortunately, she has now declined to a state in which she needs assistance with every aspect of daily living. This has been an immense frustration to her, and she has lived in near-constant denial and suspicion over her care since last winter- although she can be very sweet, her frustration does show through. 

Being positive is so important in my interactions with her. I've learned over time how much she feeds off of my own energy. She reflects back my own attitudes.  

I am led into more philosophical trains of thought, such as, what is dignity, really? How can I provide someone with that courtesy? These are questions that every caregiver should be intimate with.... 

My DH is quite "anti-facility care," due to numerous factors- although I do still consider it as an option. Although she would lose the "personal touch" of home-care in such a facility, I do consider whether having the less personal connection with her caregivers might give her some relief from the tension of family dynamics and keeping some aspect of her "old self" for us. 

Just some of my thoughts- sorry for the jumble. 

mommyandme (m&m)

It is a difficult dichotomy for sure.  My mother also raised three children on her own, being left when the third, me, was born.  She’s always been an independent, strong woman.  She also showed her frustration at being told what needs to be done.  Her dignity is very important of course, as is her safety. Unfortunately due to her decline I now must change her diapers (which I call underwear) in bed. No more commodes because of her complete incontinence, lack of understanding cues and loss of sitting independently.  I know she is humiliated some days, more so than some, by me coming in her bedroom to do this with her.  Breaks my heart for her.  At least she’s safe, that’s what I tell her and myself.  I also tell her that neither of us want it this way yet here we are.  We’ll get through it together some how and sometimes she seems to lean in to what I’m saying. 

I’m so sorry for your struggles.  She’s so fortunate to have you in her corner.   Thanks for sharing! 

Nerdyblond

Hi Oehlsena,

What is dignity? Weeeeelllllll, dignity is more or less a sort of front you put on for people. But there are many ways that could go. And it depends with dignity being associated with integrity.

 Ailing people physically lose their functions. that is not controllable, there is no dignity there. 

However, dignity can be impressed with attitude. If this lady is in good spirits, accepting of her situation, and appreciative of everything your doing, that's dignity. If she is not and continually puts on a front that looks like she is being something she is not, there is no dignity there. 

Many ways dignity could go.

May flowers

My understanding… 

Dignity is the right of a person to be treated with respect. It is not about who they were, their accomplishments, their jobs, how they carried themselves, how they treated us as LOs, but their personhood. Class is how they conducted themselves. My FIL was an engineer who worked on some amazing things but he has no more right to be treated well than a homeless person. It is something every human deserves.

Dementia is the great equalizer. It puts everyone on the same playing field, and sadly it is not a “dignified” one. We do our best to treat my FIL with dignity, but the incontinence, medical needs, personal care needs, having to talk to them like children sometimes, it feels undignified. But keeping him clean, safe, and healthy as possible IS dignity. It is meeting their needs in the most compassionate way and maintaining respect for who they are as a human. One caregiver we had always asked his permission to do things - she still had to do things he didn’t like, but she always asked. She said that was treating him with dignity.

Showing love and compassion whether a caregiver or managing care in a facility is a means of treating someone with dignity. It is really hard sometimes, and even harder when that person was a hateful person (or being hateful in dementia) but I still believe that we are to do the best we can within our limitations. Some of my thoughts on this are guided by my faith, and that I don’t believe God gives up on any of us, but I respect not everyone is on the same page as me in that.

ButterflyWings

May flowers wrote:

My understanding… 

Dignity is the right of a person to be treated with respect. It is not about who they were, their accomplishments, their jobs, how they carried themselves, how they treated us as LOs, but their personhood.  

May flowers - Well said. I couldn't agree with you more.

Joydean

May flower I believe you described dignity perfectly! And I will add God loves all His children! 

sandwichone123

I just want to comment on this part:

Although she would lose the "personal touch" of home-care in such a facility, I do consider whether having the less personal connection with her caregivers might give her some relief from the tension of family dynamics and keeping some aspect of her "old self" for us.

Sometimes a facility may have more personal care than is possible at home. When a person's needs exceed what family can provide, often there is a rotating door of "helpers" that come for a few hours or days and then move on. Often in a facility the staff is more consistent and actually has time to get to know the person and their family, providing much more personal care and building relationships way better than a desperate effort to keep someone home.

Just a thought--not intending that one is better or the other one is, just that continuity can make a positive difference.

Iris L.

Please read about anosognosia.  It is not denial or lack of acceptance, but lack of awareness due to the pathology of the dementia.  Basing care decisions on the PWD's "acceptance" of  having dementia will  not be useful.

Iris

GothicGremlin

Exactly what May flowers said (condensing here) --

Dignity is the right of a person to be treated with respect. It is not about who they were, their accomplishments, their jobs, how they carried themselves, how they treated us as LOs, but their personhood. ....  It is something every human deserves.

Yes.

I did end up placing my sister Peggy in memory care, and I do believe that she is being treated with respect and dignity there. Her filters have long since disappeared, so if staff were treating her badly I'd hear it from her. That said, I visit all the time, as do her friends -- we're all fairly vigilant. No red flags, not even pale pink ones.

Peggy and I talked about dignity issues not long after she was diagnosed. She was worried that she would get treated as "less than", and so I've always done my best to make sure to minimize those occurrences. Like -- back when she was able - letting her speak for herself when I took her to doctor's office appointments. I may have slipped the doctor a note prior to the appointment, but I always made sure to let Peggy answer the questions, unless she asked me for help. It was a matter of respect.

Paris20

Oehisena, I’ve been thinking about dignity, and indignity, since my husband, with AD, had a paralyzing stroke last month. Before that, he was slightly incontinent due to prostate cancer years ago as well as Alzheimer’s. Now in just four weeks, he is totally incontinent. His decline has sped up. He cannot think of words, can hardly feed himself left-handed (right is paralyzed) and can no longer walk. It is impossible for him to be cared for at home. Although he is in very nice facility, it breaks my heart to see what has happened to him.

My husband was a professor and administrator at a major research university. He could fix anything…plumbing, electricity, carpentry, gourmet cooking. Now he is miserable, irritable, confused, and helpless. I’ve said that this situation is one indignity heaped upon another, and yet another. There will be no improvement, no going home again. He told me today he wants to die. I understand that.