passthepepper2

Hello, I am sorry but I am hijacking another question. I have another story I would love to share.

Years ago, I looked after a religious man with a rare form of dementia. As his disease progressed, he became nonverbal and bed/chairbound. He became very violent when care was being provided to him. Medication helped some, but he was always aggressive, almost as is he was trying to protect himself. He would hit out at the air, hallucinating.

His care providers would do his care very slowly, leaving and reapproaching, then describing what they were doing for him.Often he would nod and say yes to consent, but it seemed like he would forget what was going on within a minute and start hitting again.

He was started on music therapy. The music therapist would sing religious hymns with him, and he started singing along! It was amazing to see someone who was almost completely nonverbal sing along to familiar music.

The music was opening up some kind of pathways in his brain because he would say thank you and goodbye to the therapist. He would often be very calm after these sessions. He started making eye contact again, and occasionally smiling.

Music is a very powerful tool to affect the human body in positive ways.

Edit: grammar.

Sorry to hijack the question, but I have been wanting to share this story somewhere. Others I have told have trouble seeing past the sadness of the disease to see the humour and joy that you can come across while caring for these people.

I have worked with dementia,and one particular lady I cared for was a mother to the core,a mother who must've had a wonderful and twisted sense of humour.

She has very advanced dementia, often talking in word salads. When talking with her, her emotional state is often apparent, even if her words don't make any sense.

She has a babydoll that she treats like a live baby, swaddling and cooing him. Sometimes, we feel like we can interpret where her mind is at by decoding some of the words and body language. Sometimes she wants to ask all about you and catch up like you are her old friend, other times she knows your a caregiver and playfully makes your job harder. She has the cutest "queen wave" that she will send to you from down the hall.

Now, this sweet old confused lady gets upset sometimes; she sobs and cries and we console her with hugs and tea. One night, she had been in a mischievous mood, trying to get out of bed ( she hasnt walked in over a year). We helped her into her wheelchair and brought her out to the nursing station. After a while of sitting with us, she seemed to be getting tired.Two of us went to help her into bed.

She began to cry on the way to her room, getting louder and louder. She pushed us away when we asked what was wrong.She started sobbing. As soon as we got into her room, she stops crying, looks us each in the eye, and bursts out laughing. She was giggling so hard that she started snorting, which got all of us laughing almost as hard as her. The three of us were in stitches! We helped her into bed, cackling the whole time. As we were tucking her in she was holding her stomach from the laughter, tears pouring down her face. She grabbed our hands as the laughter slows.... " Oh my girls, what a night...what a night.I love yous". I will never forget it, and I always wonder what she believed we had gotten up to that night.

edit: a word, layout.

First of all, I am so sorry this is happening to you. I will not attempt to answer that question, but rather here are some questions you can ask yourself so that you and your family are better prepared to make that decision.

You need to take a step back, look at what your values are.

What do you want the rest of your life to look like?

How is your family coping?

What kind of support system do you have, and how much are they willing and able to do for you?

How much are you comfortable with them doing for you?

Are there any "scenarios" you can think of where you would absolutely want to be institutionalized?

It may seem "cold" to think or talk about the financial aspects of the situation, but practical issues have to be addressed too for optimal well being.

Do you have a way of accessing home care services?

What kind of place can you afford to be placed in?

Will it be far from home? How often will my family come to visit?

These can be very tough questions, but there is help out there. With any type of dementia it is always best to discuss these hard topics and put your wishes in writing before you are not of sound mind.You can touch base with a care manager, social worker, and your doctor to help with these aspects of your care. Depending on where you live, there are a lot of community supports including homecare, nursing, ext. Also check what kind of dementia support groups there are, or reach out to others you know who have gone through the same type of situation. I hope you and your family do well on this journey.

Oh my god, stories like these make my ovaries ache for children. You must be a really great Dad.

Hello, I am a Nurse, are there any books that you recommend for me to learn more about this?

P.S. I just LOVE when the Music Therapist comes to the floor. Thank you for all you do!!