by Niki Hoffmann
with editorial support from Dad
As my mom has progressed with this disease, we have been blessed with help and kind acts from many friends and family that we would like to share. There are many things that you can do to show a family that is dealing with Alzheimer's or other form of dementia, that you care and that they have your support. Showing support to an Alzheimer's family is very important because of the mental and physical drain that the disease imposes on the entire family as it runs its course. We have found that people want to help but many times are afraid to contact the family, or just do not know what to do. We hope that by sharing our experiences, it might encourage others with friends or family in this situation to take action.
It is important for both family and friends to acknowledge and ask questions about the disease. Ask not only how the person who is sick is doing, but just as important, how the caregiver and other family members are coping. Too often people do not realize that it is not just the person with Alzheimer's who is the victim, but also the family. My family like many others has become quickly educated on the disease, and does not mind answering questions, especially if it will help others understand what we are dealing with. Alzheimer's and other dementing illnesses are very complex and the conditions are very different from family to family. So, for you to understand and be able to support them, it is important that you ask questions and learn about what they are experiencing.
Being a good listener is extremely important. Those caring for someone with Alzheimer's disease, and the victim themselves need to be able to talk about what they are going through. It is important for their emotional well being that they have this opportunity, and that their family and friends show understanding. There is a fear on the victims part caused by their view of diminishing self-worth, and friends or family pulling away might reinforce that fear. Interacting with an Alzheimer's family is difficult for some people because of the nature of this disease, and emotional impact of seeing someone you know and love changing into another person.
Some specific things we feel are important and easy to do:
- Call or write frequently, and just ask how things are going. Discuss your family and activities and make them still feel included. Victims still want to be part of the family and need to be included. Caregivers also need to be part of a social order and have someone to talk to.
- Include them in social events (recognizing the limited capacity of the victim) when possible, and do not forget the caregiver who frequently becomes isolated with the responsibilities as the disease progresses. Suggest that he or she get someone to stay with the victim, so they can join you for an evening out (movie, bowling, dinner, etc.).
- Make visits to the home (take the victim for a walk or drive, watch a ball game, visit, share snacks, etc.). Frequently as the disease progresses, there is a loss of socialization for the victim and the caregiver. It is important for both to have some level of social interaction to sustain a level of quality in their lives and prevent depression.
- Learn about the disease to increase your understanding, and what you might be able to do to help.. Ask the caregiver for information.. Understand that the disease is terminal.
- Share some special times remembered about the victim prior to the illness. This helps the family and caregiver cope as time progresses and the victim is transformed into someone entirely different.
Following are some specific examples of loving gestures provided by our friends and family:
- In the earlier stages, several of Mom's friends took her out to eat lunch with them once a week. They borrowed and passed around the book titled "Living in the Labyrinth" to help them understand what she was going through.
- A neighbor comes to take Mom for a walk from time to time and always asks about the family.
- As things have progressed, several of Mom's friends now come to the house twice a month and stay with her so my Dad can attend a men's support meeting.
- One of my Mom and Dad's close friends has had several small parties, including Mom's other close friends so that she could still participate and feel reasonably comfortable. They would also call to go out to eat together on Friday nights for as long as Mom was able. I know this was difficult for them as things progressed and Mom's social graces were limited.
- One of Mom's friends hosted a birthday party for her and invited her other close friends last year at a time when it was becoming difficult for her to participate in social events. She was excited and thoroughly appreciated the party (especially the cake).
- One of Dad's aunts has been writing us a letter every month for over a year now, passing along the news and asking how things are going. Most letters do not get a response, but she keeps on sending them.
- At the local Alzheimer's Memory Walk this year, Mom attended with our family, and four other couples who were close friends of her's. Although her cognitive skills and ability to communicate are mostly gone, she really enjoyed the event and the attention.
- My aunt, who is a beautician, has helped in keeping her hair cut to a short and manageable length.
- My grandmother calls frequently, and has helped find clothes for Mom to wear, has made aprons for her to protect her clothes when she eats, and sends food home with us when we visit.
- Mom's sister who lives at a long distance, calls frequently, has compiled and sent information to us on early onset Alzheimer's, and travels across the country at least once a year for a visit at my grandmother's house where we go to meet her.
- When my grandma and aunt came to visit my mom recently, one of our neighbors and two others from our church brought our dinner for the day that they arrived.
- Neighbors have brought us a May basket on May Day, flower bouquets in the summer, and have helped watch for her, having caught her several times when she wandered off down the street and brought her back.
- Many neighbors have offered their help if needed. One in particular came over and handed my Dad a piece of paper to put in his wallet that had their names written on it, their telephone number, and the message "24 hours a day" underlined .
- My Dad's brothers and several out of town friends of Mom keep contact with us through e-mail and occasional telephone calls.
- One of my friends has helped me personally by reminiscing about my Mom before she was sick..... helping me to remember, as those memories are slowly drifting away.
If there is a clear message in the above, it is that families and caregivers of dementia victims cannot go this course alone. They need the help of others, and if they are reluctant to ask, then their friends and family need to take the initiative to understand their needs and help out where they can. The emotional and eventual physical strain from caregiving will take its toll over time without a substantial support network in place.
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