Dignity - the state or quality of being worthy of respect or honor

[Alone]

It's been another long night without sleep so please forgive me if I ramble...

I believe that one of the greatest gifts I gave my Tom while he was sick was his dignity. I was with him for 20+ hours most days for 14 months, leaving only for the guilty pleasure of a shower or a moment of silence in the chapel or to accomplish a necessary chore. There were some good days when I could spend a few hours at work, but those days were few and far between. For the most part...

I was the one who helped him eat, drink, stand, sit, walk or lie down. I was the one who helped brush his teeth. I bathed him, put lotion on his damaged skin, and dressed him. I cleaned the blood, vomit and diarrhea from his embattled body. I wiped the floor, cleaned the bed, and washed his clothes when we didn't make it to the bathroom quick enough. I cooled him and talked to him during intense battles with infection. I cared for his damaged body as best I could.

I was never disgusted. I never made him feel like he was a burden. We, neither of us, was ever embarrassed by the intimate care I gave him. Our love and comfort with one another got us through so very many trials. Our bodies, minds and souls were so in sync that his care became our lovemaking.

The only help I ever received was when my Tom was hospitalized and even then if I was there my Tom's personal care was in my hands not theirs. He did not want others to do any personal care for him, just me.

I spent last night pondering the gift of dignity. Who will be there to give that gift to me should I need it? Not my son or siblings as the connection of body and soul is not there without my Tom. Medical personnel are like any other profession in that some are incompetent, some competent, some good and some great. For some, medicine is a calling and for some it is a way to pay the bills.

Will I be left in the hands of someone who is disgusted by my needs? Will I be left in the hands of someone who just wants their shift to be over? Will I be left in the hands of the incompetent?

Yes, I believe that is what is in store for me should I fall ill. I continue to ask "why?" and receive no answer.

[Jeff's Mom]

I just read your post and felt compelled to reply. I was so moved by your devotion to your husband and the loving care that you gave to him during his final months. I recognize how hard it is to care for a person when they have reached this point. I  cared for my MIL in her final months until it required entering the hospital for the final two months. (Pain Management) And so I can relate to the very personal issues of which you mentioned. I  have walked in your shoes. It's hard. My own husband is also suffering from cancer and  I have also stood by his side 24/7. My concern at this time now that I am also ill is if something happens to me who will then look after him? It is so difficult to carry this type of stress all the time. At a time that we should be able to focus on getting better... we are left standing wondering what kind of care we will eventually receive ourselves, or what will happen to them if we should be taken first? We can only pray that when it comes our time we will find ourselves in the hands of caring and devoted professionals that will show us respect. It also helps to put as much into place as you are able. Make a living will, etc. Perhaps you will go suddenly and it will not be necessary to worry about long term care. None of us know what the future holds, but it is wise to talk to a close relative or friend to let them know your wishes.

 

My own mother died some years ago of emphysema. It took ages. She spent a full two years in the hospital. The lack of oxygen had affected her mental state to the point she was not able to live at home.  It was a long and difficult death. I will say that she received excellent care from the staff and many became her friend. A few would come into her room at the end of their shift to sit on her bed to just talk for a bit.  I visited her daily and made sure she had everything she needed. There were many good people that were devoted and caring that saw to her daily needs. While it was a difficult death she did die with dignity. While there will always be horror stories I am happy to say that we experienced nothing but the utmost of compassion and respect from the end care health professionals.

 

I wish there was an answer to your question as to who will be there for you when your own time comes. It is never that easy to predict the reactions of family. We can only hope that we will be afforded the same care and dignity that we have extended. Best of luck.

[frankly]

Jerry was my caretaker.  I have MS.  It is relapsing remitting.  So I will have long stretches of being almost normal.  Then stretches of not hardly being able to function at all without help.  He's gone now and not the first person has even offered to help me.  Insurance paid for 3 home visits from a nurse.  That's it.  In the same regard, I was Jerry's caretaker as well.  He had kidney failure and heart problems.  We always worried about what would happen if both of us were down at the same time.  We were lucky, it was almost as if our own bodies were in sync.  He would be down for weeks, and I would take care of him.  Then the opposite, I would be down for weeks and he would take care of me.

 

I too wonder what is going to happen to me now.  I was by his side till the end.  A stranger will probably be by my side long before my end.  It scares the hell out of me.  So what is happening with me now, not only am I grieving for him, but I'm living in fear for myself.  Fear of the future.

 

I keep telling myself that every day I live in that fear, is a day that I lost.  That I have no idea what the future will hold for me.  Even though I keep telling myself that, so far it hasn't helped at all.  I still live in that fear.  My hope is that one day I'll wake up and give myself that pep talk (no one else is going to do it), and that maybe I'll hear myself.

 

I used to worry myself silly, what would happen if I lost Jerry.  The worst has now happened.  I can stop worrying about it now.  Instead, somehow I'm still worrying about the future.

 

I know none of that probably helped at all.  (-:  Just know that I empathize with you.

[Alone]

Kate & Frankly - thank you so very much for the kind words of understanding.  It's amazing how beautiful care-taking can be... it can bring you even closer to your loved one... it can also break you.  I'm so glad that for the three of us, care-taking brought closeness and even greater love.  I'm sure that others on this site found that their caretaker role brought another level of love.

 

But the question "who will care for me" hangs in the air for many of us.  The proposition of care is even more problematic if you don't have someone who can at least be an advocate for your care by others.  And of course, the issue of cost always hangs over our heads.  A probate attorney actually suggested to me that I should be more cautious about my health because my finances are not ready to support another major illness.  Really?  But he is right....

[backyarder1]

Hi everyone. I didn't go through any long term care with my husband but I did experience my mother's slow decline into Alzheimer's and was there for her throughout that process. I understand what everyone is saying about dignity. I remember several times when she had to be taken to the emergency room for several things and if I wasn't there, they would have allowed her to wet the bed rather than helping her to the bathroom and she would have been experiencing tremendous fear if I wasn't there to comfort her. And, like you, I have no husband or children to be there for me if the same thing happens to me.

I guess all we can do at this point in our life is to enjoy each moment that we have and do what we can to plan for our future. Perhaps look into what kinds of support programs will be available to us.

But for now, we have already experienced such a huge loss that it can't possibly do us any good to start worrying about a future loss before we have even dealt with this one. I wish us all a peace filled day.

[Alone]

BY1 - you are right that we shouldn't, don't need to add to our worries or sadness. But I believe that we need to recognize and acknowledge our fears and do what we can to diminish those fears. In my case stating my fear helps in that effort. I know you understand....

I also believe that our posts regarding planning issues are helpful. Posts regarding wills made me recheck a few things in my will. Posts regarding blended families caused me to consider a living trust. Posts regarding insurance reminded me to check coverage issues. Posts regarding financial concerns caused me to review how my bank accounts were setup. Posts about care-giving reminded me to make sure the right people have copies of my advance medical directives. And so on...

So thank you to everyone who shares as we really are helping one another in many, many ways.

[HeyJude]

I'm in the same boat.  It was just me and Jerry.  Then my mother moved in with us after my father died.  Mom is still with me, she is 85 and in great shape.  But it is totally illogical to even think that she will take care of me.  I have a son in California, I know he will help in decision making but there isn't anyone left who will sit with me in the hospital etc.  Scary thought.

 

I never in a million years thought that I'd lose my husband so young.  He was in very good health overall.  He had a heart/kidney transplant 9 1/2 yrs prior but wasn't having any problems associated with that. He got some bizarre fungal pneumonia which he recovered from but then died night #2 at the physical rehab hospital.  I'm having a crappy day...

[Alone]

HeyJude - Sorry you're having a crappy day. I hope it gets better.

Like you, I thought these concerns were years in the future. My husband was 68 when he died but his mother lived to be 91, his older brother and sister are still alive and healthy, and until leukemia hit my Tom was in overall good health.

I guess it proves that we just never know...