[This post is part of a regular series from Faith, AGE’s CaregiverU Coordinator and personal expert on being a family caregiver – you’ll continue hearing from her on a range of topics once a month.]
May seems to be the month of graduations and June is the traditional wedding month. There is great joy and excitement as friends and family celebrate with the graduate or witness the wedding vows of the bride and groom. The excitement breeds noise and a delightful chaos upon which wonderful memories are built. All this is absolutely fantastic, but if someone in the group has a cognitive disability that individual will have difficulty adapting to the spontaneity and lack of structure.
I have three adult children with spouses, for a grand total of six adult children in our family. Over the last three years we’ve had two weddings, a birth and a baptism which have been great family events to celebrate. My husband, who has a cognitive disability, has needed a bit of help to ensure that the focus could be on the people for whom the event was created. In the process I’ve gained some insights to share.
My only daughter was married in 2010 in a small church wedding here in Austin. It was very personal, with many friends and family helping to host the event. Lots of worker bees tying ribbons and inserting candles into floral arrangements! My son was married the following year in a much larger wedding in another city. The next year my first grandson was born. Through it all we managed to celebrate well, build special family memories, and learn many lessons in the process. Hope these ‘Lessons Learned’ will help others!
• Support the person(s) being honored. The celebration is about them and for them.
• However, also plan something special during the event for the person with the disability. This is the ‘carrot’ that will ease the discomfort of saying ‘no’ to something else.
At the time of the first wedding, my husband was usually fairly able to cope. The sudden inability to solve a problem, though, would cause great anxiety and frustration. Realizing all this, my daughter was concerned about him walking her down the aisle. She was certain she wanted to do the father/daughter dance at the reception, and they enjoyed working together on that. It was not until shortly before leaving the house for the rehearsal, that she told her father that she had decided to have her brothers walk her down the aisle. Her father had a meltdown. Big brother handled Dad, and I consoled a tearful daughter. Eventually we arrived at the church for rehearsal, and the walk down the aisle was beautiful! Her two brothers escorted her, and when the pastor asked the usual, ’Who gives this woman to be married?’, we as a family said, “Her family.”
• Plan ahead to meet the needs of the person with a disability.
Chaotic family events are stressful, so work to lower the stress before the start of the event. On the day of the wedding, one of the boys took Dad to the gym for a good morning work out to get rid of some of the anxiety. A kind friend entertained him before the wedding, while I helped the bride (my daughter).
• Designate a quiet place for the person with a disability and designate a person who can be with the individual there.
That person should know a signal that will indicate it’s time for the quiet space. Melt downs are awful and can ruin a perfectly lovely time, so plan ahead and don’t allow it to happen in the midst of all the people.
• Ask people to help, and organize that help.
At my daughter’s wedding, the cry room to the side of the sanctuary was the designated quiet space. At the reception, various people had 15 minute slots assigned to be with my husband. He loved that attention.
• Some people are not comfortable working with someone with a cognitive disability and they feel uneasy doing it. Accept that and utilize their help with other tasks.
I learned this the hard way, by asking someone to step out of their comfort zone to help. That person has never forgotten the discomfort and it has tainted our relationship ever since then. Don’t let that happen to you.
• Try to keep things as close to the normal as possible.
Meals are very important to my husband, and he did not view a buffet as a meal. His perspective was that he missed a meal!
• Be a creative solution finder!
At the second wedding, we were to light the groom’s candle on the altar. It was adjacent to the unity candle, and my hubby desperately wanted to light that candle, too. I placed my hand over the unity candle to prevent that!
• Plan for good care and special moments for the caregiver.
At the second wedding, I did not plan well for good self care, and I regretfully did not savor the event as much as I had hoped to do. I stayed in one place to watch over my husband, rather than circulating around the large room, greeting people. One very sweet moment though was the mother and groom dance to the song ‘Rainbow Connection’ from an old Muppet movie– I will treasure that forever.
• Family relationships are golden; value and honor.
This year, my daughter and son-in-law became first time parents to a baby boy. What a joy to share in this young man’s life from his very first breath! I’ve juggled the responsibilities of job and family caregiver to lend my support to the young family, and other family members have lent their support to me. It has strengthened all our family bonds. In all these events, my husband has been fully included, and he is in many of the event pictures. These images stir up special memories put smiles on the faces of those who fondly remember.
This was a long list, but there are many things that can help on the day of major events. Do you have any suggestions for making major events easier on the person you care for?