myjourneysinsight

WHEN I FEEL DESPAIR

Posted on January 4, 2011 by Judy

My mom with her older brother, David. He saved her life by getting antibiotics for her while he was in the army.

Bad, bad day today.

I wanted to pull out all the hairs on my head.

This afternoon, I was told my mother was in a lot of pain – so I agreed to a small dose of Vicodin. Although I knew she didn’t do well on pain meds, I felt I had no choice!

So, my mom disappeared with the drug. I felt so sad to see her that way. Her eyes were glazed and she could not talk. But she did say one thing. She said, “Honey, I need some cough medicine.”

I went to speak with the nurse. I decided no more Vicodin. My mom was smiling yesterday – I understood they wanted to move her; there had to be another way.

After speaking with the nurse, I became outraged. The reason she had so much pain, was because the Tylenol (which had always really helped her) was discontinued. It seems that when she was discharged from the hospital, the order for it somehow “vanished.” She hadn’t received any all day.

The nurse told me basically that it wasn’t their fault.

I have had this problem more times than it is possible to imagine!

I have been told over and over again that Tylenol was not adequate to address my mother’s pain. However, twenty minutes after receiving it – she would smile and say she felt fine. After about six hours, she would become edgy and I knew it was time for another dose.

Just two days ago, I arrived at the hospital and they were about to give her morphine. However, I asked them if she had already had her Tylenol. I was told it wouldn’t really help. They said that 99% of patients do not get relief from Tylenol. I said, “Well my mom is in the 1%.” Once again, my mom was smiling and pain-free after twenty minutes.

I guess when the percentages are against you – you must prove it over and over!

The truth be told, I am upset with myself. I took the morning off and had no idea she didn’t get something as basic as Tylenol – her facility has always given it to her regularly for the last two years to manage her back pain.

Today, I raised my voice to her “new” doctor. He had not seen her yet. I had left him a message last night. My mother wanted some Robitussen for her cough. In the past, it has helped her to sleep and feel better.

I said to the doctor, “My mom asked for some Robitussen last night. She just asked me again – can she have some?” I thought about the fact that my father said he had a bootleg bottle and gave it to her himself. I understood why now.

The doctor said, “It’s very important to first understand why she’s coughing.”

I explained that she was in the hospital and had just seen a pulmonolgist. He determined she didn’t have an infection. Of course, I had just raised my voice about why my mother was not given the one thing that had always helped her – Tylenol.

Now the new doctor lost patience with me. He said, “You know, I’m going to do my job and I don’t prescribe medication just because you want it!”

He added, “However, because she isn’t wheezing – I’ll give her the Robitussen.”

My mother is dying – and I have to fight over these things!

Last night, my mom was so happy. Today, I wish she could have stayed that way.

I do understand that it was necessary to find out how much movement she could handle. I understand she was screaming and in agony when she was moved. It could have been a better day had she had her Tylenol – but maybe not.

I understand with this situation there is no “recovery.” Without allowing my mother hip surgery (which she did not want), I have been told that I’ve condemned her to a horrible existence.

Well, she might be dying, but I don’t know why the alternative of surgery is any better!

It’s only been four days since her fall. Today, I was told she’s been deemed hopeless, as far as any physical therapy goes.

I guess finding ways for her to move – is a little too challenging right now.

Perhaps for a short time, my mom could maintain her smile without pain – if she’s not moved. There is a certain kind of bed where she could sit up more (a Geri-bed). I pointed out to her facility that it might be an excellent option for her. She could be taken to the dining room – I’ve seen other patients with it. No one has jumped on my suggestion. I will insist if I have to!

I saw my mother use a bedpan with determination. She wants to try to move. I want her to have a chance, too.

But how do I know what to do when I’m told it’s too painful to move her in order to bathe her? I wonder if I could help bathe her myself with a washcloth.

I am now navigating through a brewing storm. The sky is dark, gray, and ominous. I feel myself shudder, as a chill overcomes me.

I signed up with Hospice today. I am not sure how my mother will handle this situation.

Although my mom is skeletal now, she still wants to live. I tried to explain to her about the extra attention she would receive from Hospice care. There are issues about whether she’ll receive antibiotics or even the gamma globulin infusion she has received once a month for the last fifty years.

However, today she was too drugged to understand.

When I left my mom tonight – her glazed eyes still smiled at me.

I’m done taking breaks to pace myself. As I’ve learned, when you’re captain of the ship – you can’t afford to let anything drift. No one else really can steer. With a ship that is sailing into the storm, well, every moment counts.

Sadly, I realize that my steering cannot really do much on a stormy sea.

One day the sun will shine, and the sea will become calm.

I’ll hold her hand tomorrow morning and we’ll have a nice talk.

with-my-mom-at-the-nursing-home

© Judy Unger and http://www.myjourneysinsight.com 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

Tagged "sandwich generation", Aging Parents, Hospice, lyric writing, my mother, original songs, songwriting | Leave a comment

HOW GRATEFUL I CAN BE

Posted on January 4, 2011 by Judy

When I was eight, I had no idea I’d make decisions about my parents.

Sixteen years ago, I received a note from a woman I played tennis with. Her words were very meaningful for me.

She wrote to me because I had said something that touched her. All those years ago, I had told her that I could not imagine losing my mother. At that time, my mother was having a hysterectomy.

At this time, I feel like I’ve finally accepted the fact that life and death are part of a journey. Although I am not certain of the “destination.” I’m aware that it’s not forever. Jason’s journey happened to be “short and sweet.”

I realize how fortunate I was to have had my mother’s love throughout my life for so many years.

I was given this note seventeen years ago. I have not seen the woman who wrote it for fifteen years. Clicking on this makes it larger.

Tonight, my writing is more than just an update. It is about intense satisfaction from living in the moment.

I feel like I’m swimming in a pool of emotion, and intense waves of joy are washing over my heart!

This picture was taken at Thanksgiving this year.

cour·age n

the ability to face danger, difficulty, uncertainty, or pain without being overcome by fear or being deflected from a chosen course of action.

Since my mother had sustained a hip fracture on Thursday night, I was faced with what was a “no win” situation. Being that it was a holiday weekend didn’t help. I had to make an immediate decision to sign consent for her to have surgery – and the sooner the better!

My mother’s surgery was already scheduled. She would be the second surgery on Friday morning, just before New Year’s Eve. The surgeon was respected and highly recommended.

To refuse surgery was simply not an option.

This was what I was told:

I would be condemning my mother to confinement in bed, with constant pain.

Without surgery, she might not even live beyond the weekend. Most patients died within six months.

On Friday, I made the gut-wrenching decision. I’d rather my mother die without enduring the ordeal of surgery. I knew in my gut, she wouldn’t survive it anyway. When she had shoulder surgery last year and she was much stronger, she still had severe, complications. Her two-month ordeal on a respirator was an absolute nightmare.

I have learned to trust my intuition.

Throughout the weekend, the pressure intensified. Numerous medical professionals relentlessly told me that my “radical decision” had condemned my mother to a rapid and painful death.

It’s quite possible that might still be true.

However, while I was hearing that – my mother was comfortable and not in pain.

My decision was simply not based on what would extend her life!

Just like the last time when my mother was ill, the supportive messages poured in. Here were messages from two of my friends:

I just want to tell you that you made the right decision, in my opinion. The worst decision of my entire life was to have my mom have a round of chemotherapy rather than let her die in two weeks. It did no good and put her in absolute hell for the last six weeks of her life. I will always regret that I tried this–except that doctors told me her life could be extended by as much as 18 months and that by then they might have something else to extend it even more. If I had only known the truth!

Sorry you’re going through this. After a small heart attack, my mom had heart surgery because the doctor told me it was a matter of time before she had a major heart attack. Anyway, after three months in and out of the hospital, she kept going downhill and died. I keep thinking, “What if she didn’t have the surgery?” Could she have kept going a couple more years? Her mind was sharp as a tack so it was even more difficult.

7:00 p.m.

I decided my oldest son would accompany me. When she saw her grandson, my mother’s face lit up like a light bulb. I told my mother the news that the hospital was releasing her. She would be returning to her nursing facility shortly.

She cried tears of joy and said, “You made this happen didn’t you? Only my amazing daughter could do this for me! I am happier than I’ve ever been in my entire life to leave this hospital! I feel great and I don’t even have any pain!”

I sat back in the corner of the room and watched my son hold his grandma’s hand. It was so beautiful I could hardly believe it was real.

My mother was nervous when the transport team arrived. She was beaming as she was easily moved onto the gurney. Knowing that my son would accompany her on the ambulance ride had her joyous.

As if this wasn’t enough exhilaration for one evening, I must share more.

The ambulance had just left the hospital. I called my father to see if I could pick him up, but he told me he was already waiting at my mother’s empty bed for her to arrive.

I stopped to get some gas, and arrived at the nursing facility a few minutes later. As I walked down the hallway, I saw my son and father were sitting outside my mother’s room. They told me she was being weighed and examined

My father bent over and clutched me; he openly sobbed.

He exclaimed, “Your mother stood up! She can stand – and she was able to sit!”

I looked at my father – I really was in shock. Of course, I asked him if she was in any pain.

He said she did not have any pain.

Then he said, “Do you think we can go to lunch this Friday at IHOP – just like we do every week?”

I come from a family where denial runs rampant. I answered him with, “I don’t think this week – but maybe next.”

I went into the room to see my mom when she was ready. Her happiness at being in her bed surrounded by love and all the things that comforted her was quite apparent. My father gently put my mother’s watch on her wrist.

She said, “Where did you find this? I’ve been looking all over for it!”

My mother always obsessed about having her purse nearby. This obsession has always bothered my father tremendously. I watched as he surprised her with her purse last night. He said to me, “Even if she doesn’t need it, I know she’ll sleep better having it next to her!”

My son took videos, while my father made a phone call. I absorbed about all I could.

Perhaps my mother will soon be gone. Or maybe she’ll prove everyone wrong, and live another five years.

I have no idea. I only know that tonight was glorious.

Tonight I learned how grateful I could be!

http://www.facebook.com/video/?of=100001266767473

My oldest son created a Facebook site so he could share the videos of him and his grandma. On those videos my mother’s confusion is evident, however her genuine joy and sweetness radiates.

On the last video, she lovingly kisses him and my wonderful son tells her how much he loves her.

Tagged "sandwich generation", Aging Parents, my mother | Leave a comment

I CAN’T LIVE IN THE PAST

Posted on January 1, 2011 by Judy

This morning my stomach hurt. It was very familiar.

I still remembered the day my colitis began. It was several years ago when I entered a rehab facility where my mother had recently been transferred. As I walked down the hallway, suddenly the smells overwhelmed me – I had to find a bathroom immediately because I was sick.

That was the beginning of a horrible condition where I always needed to find a bathroom quickly. My aching stomach controlled me.

During any crisis I’ve faced in the past, I was always on “high alert.” How quickly that feeling has come back to me!

Today, it did not feel like it was a “holiday.” Last night I had cancelled my New Year’s plans and stayed at the hospital with my mother.

Now, all that mattered for me was keeping myself calm enough to cope. I needed to face the challenge of my mother’s situation with courage; it could be a “long haul.”

I wondered if I would continue singing or maintaining any semblance of my musical life. When I had those thoughts about a “long haul,” it certainly wasn’t helpful.

I spoke with my husband and he was definitely helpful for me. Because he had suffered tremendously with the deterioration and death of both his parents, he truly understood and empathized. His support buoyed me, because he agreed with me 100%.

He did not doubt for one moment that I was doing anything but making the best decision for my mother. For that, I was grateful!

A year ago, I wrote emails with detailed updates about my mother’s condition. I’ve decided that my blog is a better way to share.

At this moment, I’d rather write my feelings instead of medical details . . .

Today, when I entered my mother’s hospital room, she didn’t bawl like a baby to see me, as she had the day before. Instead, she was gently dozing; I noticed she had finished a bowl of oatmeal. Later on, I found out an exceptionally, kind nurse had fed her.

Although, there were some unpleasant moments today, overall it wasn’t the ordeal I had anticipated.

I woke up this morning on “high alert;” ready to face whatever crisis would erupt.

Instead, of the “tortured memories” that I had anticipated – I realized that there were still “touching memories” for me to discover.

I only had to look for them!

My father did not cry once today. He usually wouldn’t get close to my mother, and was irritated when I “prodded him.” Today, when he went over to her bed to say goodbye – I took his picture.

I assisted my mother so she could brush her own teeth. Afterwards, she was radiant. She asked me if I wanted to get ready for bed, too. I joked and said, “Shall I climb into bed with you?” We both laughed.

Today I even wrote song lyrics while she dozed. I felt inspired.

It was on New Year’s Day, exactly a year ago, that I shared a picture of my mother while on a respirator. She was smiling and it was a beautiful picture for me.

Here it was a year later, and my mother had beaten the odds and got off that respirator. I decided to take more hospital pictures.

As my post title says, “I can’t live in the past, because something went wrong.”

I am living in the present.

There is no longer any “right or wrong” for me.

All that matters for me is that there are quality moments for my mom – without pain!

Last night”

Below is correspondence with my good friend, Steve (his words are in blue):

That picture of your Dad saying goodbye to your Mom was very touching.

My mom agreed to the pictures – of course, she’s not in her usual state of mind – she didn’t worry if her hair was combed. What was important is that she was happy and wanted to show everyone.

That means so much more to know your Mom agreed to the pictures.

Hmm – maybe I should write that in the blog so people won’t have doubts. What do you think? I also took pictures of her with her granddaughter, Marisa, which I plan to share with my brother. Marisa took the pictures for me – my mom loved looking at them, too.

Yes, it gives us a better idea of what shape she was in your visit, that she was alert and showing interest in things like the pictures.

Thanks for the advice, Steve. I’ll do that.

Tagged "sandwich generation", Advocacy, Aging Parents, Caregiving, mother's illness | 1 Comment

I TRY TO BE BRAVE

Posted on December 31, 2010 by Judy

“A HOSPITAL IS A PLACE”

A hospital is a place I hope to never see again once I leave. However, I am not able to leave.

As I walk to my car, I might feel a momentary rush of freedom. It feels like I’ve been released from a prison. However, the “hospital prison” simply follows me. I am relentlessly pursued.

My phone is about to ring at any moment. The call is most certainly about my punishment for even thinking about escaping!

A hospital is a place where my appetite is outside of the realm of my own body. I feel like I never want to eat again, and yet in a moment I am easily overwhelmed with voracious hunger. I eat whatever is most easily available and am astonished how the hunger can be overwhelming while at the same time food has no taste.

A hospital is a place where I watch those I love reduced to their most human condition. I scream for their pain and fight to remain calm and soothing all at the same time.

A hospital is a place where the utmost intelligence is required to make unbelievably, challenging decisions. At the same time that intellect is necessary for “quick thinking,” all decisions end up coming from the heart and not the brain.

A hospital is a place where I am so important that every other part of my life is miniscule. Nothing matters except my being there.

A hospital is a place where a story is unfolding. The story has a beginning, middle, and a clear ending where there is no mystery.

A hospital is a place that has taught me how to truly travel. I have learned to travel to destinations in my mind where I am uplifted and sane. I used to travel to beautiful vistas and scenes of my own creation. Now I travel to places that are filled with musical scores.

10 p.m., December 31^st – Friday evening

Message to a friend:

This is probably the most difficult decision of my life.

It is very, very hard to disagree with doctors. Certainly their expertise is in keeping patients alive. But my mother’s quality of life has been rapidly diminishing. This would be a difficult surgery for her to recover from. I don’t want to put her through it, even though there’s a chance she could “physically” recover. What good is a recovery if her mind is gone? Her panic and fear would be worsened. At the moment, she seems to be accepting her bedridden situation and her pain is manageable.

Even if she were able to walk again (which is unlikely) – she would probably sustain another fall since she doesn’t understand she’s not supposed to walk unassisted. She would be placed in the Alzheimer’s unit to be watched and I know she has been terrified of moving there. In fact, her fall resulted from her general unhappiness and misery over her predicament – she hates living in this dependent state.

That is pretty much what I gathered from discussing this with her. Not that she’s in a “state of mind” to make a decision, but I certainly wanted her input.

My mother’s dementia has been “unsolvable” and rapidly progressing. Although she might certainly have a chance with successful hip surgery, I’m not sure she wants her life extended in that way. I know that sounds horrible to say, but mentally it’s not going to get better and likely to rapidly worsen.

At this moment, she already has a possible, respiratory infection going on. My father has already stated that if she has pneumonia he won’t allow her to be intubated.

I think pneumonia is going to do her in with whatever way we go.

I will make sure that she is comfortable with whatever time is left. Tonight she ate and was smiling all evening. I brought my father with me (against his wishes). We lit Sabbath candles and together sang the blessings. My mother’s face was truly radiant.

I have reached a place in my life where I truly trust my intuition. I have worried that I am selfish in wanting to make things “end quicker.” Is it easier for me? The truth is that I don’t want my mom on this earth any longer than she has to be if it means she is suffering.

I have always said this. Far worse than death is to see someone you love suffer. I love my mom too much for that and I’m willing to let her go instead.

This is all certainly painful, but I do feel much stronger than last year. I have really transformed over this year, and it has helped me a lot.

Love, Judy

A SUPPORTIVE MESSAGE:

On Dec 31, 2010, Nancy wrote:

Dear Judy,

I am thinking of you.

I certainly cannot help with your decision, but I can say that whatever you decide will be the BEST decision you could make. It has to be. And it must be left at that – no matter what. That’s all there is. We cannot turn back the clock. Trust the decision you make and it is out of your hands.

You are a loving and caring daughter seeking all the advice and wisdom you can find. That is the most you can do. You are doing the right thing for your mom and your family.

Love you Judy,

Nan XX

Mom & I at Disneyland