#caregivers support - Meanderings

A Precious Gift

It was almost two weeks after my Bert and I had been apart that I got a call reminding me of an appointment. It came from someone I consider to be a friend though I met her only because my Bert has Alzheimer disease. As we confirmed the appointment she ended by saying: “I will also be bringing a special gift for you.”

“Oh? What is it?

“I cannot tell you. It’s a surprise.”

I was curious. I like getting gifts. Who doesn’t?

The day arrived. My friend came in with a big smile.

I had waited in anticipation so after the hugs and the greetings I said: “OK, what is it?”

“This is a gift from your friends at the Adult Day Programme. It is a CD of Bert and the music therapist singing Paula’s Song. They worked together and Bert helped her with the words. He insisted on some of them and with a bit of coaching and patience they made up this song for you. They recorded it. You can hear Bert singing on it to you. It truly is from him to you.”

She handed me a CD case. On the cover there is a wedding picture of Bert and myself. There is a white column on the left that says “DEAR PAULA”. On opening the case there is the CD with the title “Paula’s Song”. On the left hand side behind the photograph are the words of the song. It is a familiar tune.

Chorus

You are my sunshine, my only sunshine,

You make me happy when skies are grey.

You’ll never know dear how much I love you,

Please don’t take my sunshine away.

She’s always happy, my beauty lady

We stick together like a lock

You make me happy, oh dear Paula

I do love you oh so much

Chorus

You’re always with me my favorite person

We have travelled all the world

You’re always smiling, and you are happy

You bring joy to all of my world.

Chorus

Sometimes, love, the world ain’t easy

Please take care and watch your step

Don’t go out late, love, and please be careful

I want you safe and here with me.

I read the words. Tears trembled on my cheeks but did not fall. Through my blurred vision a voice heard in my heart told me this was from my Bert to me. These were his words made coherent by a music therapist who concentrated on his love and with patience got him to articulate it in this, my song, Paula’s song.

It was almost three weeks before I listened to the CD. As expected, it left me in tears. I heard my Bert with my senses. I saw him, I felt him. In my mind I could see how patiently he worked with the therapist to put this all together. I heard the hesitant voice on the verses except for a few words here and there. The vocals are stronger and clearer as he sang the well known tune and words of the chorus. I heard him in my heart.

I miss the goodbye ritual we did as I left him with that amazing staff at the Adult Day Programme with his final words always being:” See you soon, my Paula. Drive carefully.”

He took care of me. He still takes care of me in the limited but so precious ways he can. Now he has given me the number one song of the century that for me will never go off the charts. I see myself playing this when I am lonely, when I miss my Bert, when I think of my loss and I will smile through the tears. My Bert is the one that can always make me happy.

How can I thank the staff for this gift? I cannot, but I will always be grateful for this most precious gift of my Bert’s voice singing his song for me and to me.

The Meander: I have learned throughout this journey that some of the best caregivers are the staff and workers who care for our loved ones. The staff of our Adult Day Programme is among the best caregivers I know. My Bert and I thank you for this tangible and most precious gift of your tender loving care.

How do you do it? Alzheimer’s Society Help.

Once the diagnosis of Alzheimer’s disease was confirmed my first reaction was: Oh my God, what do I do now? I think this is the usual reaction. Bashing your head against the nearest wall (bad headache), tearing out your hair (pre-mature baldness), screaming to the high heavens (how uncouth)or jumping off the nearest cliff (splat) may come to mind but none of that will work

So, what do you do? Find help. In some cases that may be easier said than done but fortunately in my case, living in Canada and in a City with a high senior population and services gave me an edge.

Once you have confirmation, if you just go on your computer and start a search for dementia or Alzheimer’s disease you will be able to build that cliff from maybe just one percent of the information you see and it would still take you a while to hit ‘splat’. Once your eyes uncross and your mind un-boggles find the home page of your national Alzheimer’s society, www.alzheimer.ca in Canada. Help is immediate as you will get direction to your Provincial and Regional and Local offices. You may be tempted to linger and start reading right away when you see the Quick Links. Don’t. Go directly to your local office. You will thank me when a quick call results in an invitation to visit accompanied by a brief conversation on the kind of services provided.

Why stress ‘local’? On my very first visit I received information about current programmes, workshops, seminars, activities for both loved one and caregiver, jointly and separately. First Steps and Next Steps are just two seminar series that help you get a grip on the disease, the impact on both partners and future considerations. They are exactly as stated. What to do and expect first, what comes next including making a will, financial issues, medications control, real estate, funereal funeral considerations, all done by the appropriate professionals. Your local office is connected to resources and services. No need to wonder why all this is important. Let’s be practical, some things had better be done before your loved one has lost too many brain cells to know what is happening. The legal ramifications alone can be beyond horrendous. Also, as long as your partner can function well, I know that two heads are better than one.

But, best of all I was connected to a counsellor. I could call the office ask for a particular person, tell her/him my issue and be guided, helped, and given information so that I could make informed decisions about my Bert. Local also meant that the places I needed to go, the services I needed to access were all within easy reach. My local office had not just a description of the service and address, they also had a name. I could ask for a person. They also made some calls on our behalf.

The people in my local office are extraordinary. They will help you to curb your attempt to take every brochure available, explaining what should come first. They are professional, caring, experienced and excellent listeners. They are the biggest boosters of caregivers and remind you to take care of you first, so you are able to take care of your loved one. This is one of the PhD courses at my Alzheimer’s University. It is so difficult to do this. Caregivers need to be reminded and your counsellor will do the reminding..

This was my first stop and it is still a most important link. If I have not connected with my counsellor for a while I will get a call just asking how things are or to give me some relevant information. She is aware of my Lifeline, the wonderful support group, as all we Lifers are connected to our local Alzheimer’s office. She applauds that. She knows that the Lifers connection is very important.

The Meander: Sometimes we find it hard to ask for help. Being a caregiver will soon cure you of that. You cannot do it alone. You cannot do it alone. Ask for and take any help you can get. We all need it. My Lifeline family and my Alzheimer’s Society local office are two of my companions on this journey. I am well served and blessed.

For Caregivers: All Mothers!

Happy Mother’s Day to all mothers!

To those who never gave birth but are mothers of the heart

To those who are mothers on the second shift

To caregiver mothers who are mothers to husbands, mothers, fathers, aunts, uncles, siblings, friends grandparents, partners

To men who are caregiver mothers to wives, mothers, fathers, siblings, grandparents, friends, partners.

Today, I want to be mother to all caregiver mothers, to embrace you, to give you hugs, to let you know that as a caregiver mother I do know the sorrow, the joy and love of being a caregiver mother.

Here’s to another perfect day of doing and an infinitesimal token of appreciation for all we do.

Happy Mother’s Day!

The Meander: Every week I look forward to receiving the Alzheimer’s Weekly & Dementia Weekly Newsletter. It is filled with information on the many forms of dementia, new research, caregiver support and ideas to ease our special journey. It links to other publications and organizations. Each issue begins with a Thought for the Week similar to the one reprinted above. I must confess that in addition to the articles I do look forward to these gems with anticipation.

Thank you John Wooden.

WWWW means Wonderful, Wild and Wacky Wednesdays

Wednesday mornings are wonderful. We laugh. It is one big inside joke for ten people.

In 2014 my husband was diagnosed with Dementia. I was given a host of print resources, contact information for various support agencies and groups. I contacted the local chapter of the Alzheimer’s Society. I got more information and schedules for upcoming seminars that could prove useful. It all seemed overwhelming but I knew this disease was not to be taken lightly, so I just decided to take things slowly as I learned and raged against the unfairness of it all.

We were told of a new programme called Minds in Motion. Funding had been secured for an eight week session every Wednesday morning from 10 a.m. to 12 noon. The first hour would consist of gentle exercise, mostly while seated and the second hour was for socializing. There would be games, puzzles, talking, telling our own stories. Minds in Motion is a direct response to the proven scientific fact that social interaction and exercise is vital for dementia patients to help them to keep their brains and bodies functioning for as long as possible. In fact that is a requirement for everyone. Minds in Motion is a programme for both caregivers and patients. Perfect.

I signed on, and so did 12 other couples. Minds in Motion was such a success, the only negative feedback was that we needed more sessions.

Minds in Motion created a community. As another series drew to a close we wanted some continuity. We had found a common ground and wanted to stay in touch. One suggested we all go to lunch after the last session. We did and at lunch we spoke about how valuable the sessions were and hoped they would continue. Another wondered if we could meet for coffee on Wednesday mornings since we already had that time reserved for Alzheimer’s activities. There was general agreement. It would be purely voluntary. Anyone who wanted to would meet at a nearby coffee shop on Wednesday mornings.

Five couples showed up. Thus was born WWWW Wonderful, Wild and Wacky Wednesdays. This day is sacrosanct. Wednesday is reserved for our couples activity, either Minds in Motion or coffee time and only missed for priorities such as illness, medical appointments and laboratory tests. It is a lifeline in a world turned upside down, a bridge between our two worlds, the real and the one known as Alzheimer’s world. It is my lifeline. Wednesday mornings make the insane, sane.

The Meander: Five couples showed up. Five couples, nearly strangers now best friends. Five couples connected by a dread disease. Five couples who together try to outwrestle dementia. Five couples who support each other and have magically found solace and laughter. Every caregiver needs a lifeline like this.