The holiday season is a time for visiting and reconnecting with family, friends and neighbors. Sometimes this season can be sad or stressful for those caring for a loved one with Alzheimer’s disease (AD). These hints are our gift in wishing you an enjoyable holiday season.
- Holidays can be meaningful, enriching times for both the person with AD and family. Maintaining (or adapting) old family rituals and traditions helps all family members feel a sense of belonging and family identity. For a person with AD, this link with a familiar past is reassuring and builds self-esteem, i.e. “Look at the beautiful family I created!”
- Set your own limits early, and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Your situation is different now.
- Encourage family and friends to visit EVEN IF IT IS PAINFUL FOR THEM. Keep the number of persons visiting at one time to a minimum, or try a few people visiting quietly with the person with AD in a separate room. Most people with AD can pull it together for brief periods, if they have adequate private rest in between.
- Try some simple holiday preparation with the person with AD several days ahead. Just observing your preparations will familiarize him/her with the upcoming festivities; if they participate with you, they experience the pleasure of helping and giving as well as the fun of anticipation and reminiscing.
- Prepare potential quiet distractions (a family photo album or a simple repetitive chore like cracking nuts) to use if the person with AD becomes upset or over-stimulated.
- Try to avoid situations that further confuse or frustrate many people with AD:
- crowds of people who expect the person with AD to remember them
- noise, loud conversations or loud music
- strange or different surroundings
- changes in light intensity – too bright or too dark
- over-indulgence in rich or special food or drink (especially alcohol)
- change in regular routine and sleep patterns
- Try scheduling activities, especially some outdoor exercise, early in the day to avoid fatigue from added activity at the end of a long day. Familiar holiday music, story-telling, singing or religious services (even on TV) may be especially enjoyable.
- If you receive invitations to holiday celebrations which the person with AD cannot attend, GO YOURSELF. Enjoy the chance to be with friends and family who love you and enjoy your company, with or without your relative.
Preparing the Guests
- Explain as clearly as possible what has happened to the person with AD. Give examples of the unusual behaviors that may take place: incontinence, eating food with fingers, wandering, hallucinations.
- Explain that it may not be appropriate behavior but the person with AD has a memory loss
- and does not remember what is expected and acceptable. Remind the visitor through phone calls or letters to be understanding and not to shun the person with AD.
- If this is the first visit since the person with AD became severely impaired, tell the visitor the visit may be painful. The memory-impaired person may not remember the guest’s name or relationship.
- Explain that memory loss is the result of the disease and it is not intentional.
- Stress with the guests that what is important is the meaningfulness of the moment spent together and not what the person remembers.
Preparing the Memory-Impaired Person
- Begin showing a picture of the guest to the person a week before the arrival.
- Spend more time each day explaining who the visitor is while showing the picture.
- Arrange a phone call for the person with AD and the visitor. The conversation may help both.The call gives the visitor an idea what to expect and gives the memory-impaired person an opportunity to familiarize him/herself with the visitor.
- Keep the memory-impaired person’s routine as close to normal as possible.
- During the hustle and bustle of the holiday season, guard against fatigue and find time for adequate rest.
Tips for Caregivers Who Need a Break
Recently the Mayo Clinic presented an article that we found very helpful. It offers some practical advice on ways to better find respite when you are the primary caretaker as well as some ways to strategize the use of In-Home or Adult Day service models in caretaking. Especially useful is how to introduce your loved one to these types of services. Please read some of the tips below or read the full article here: Tips for Caregivers Who Need a Break
- Believe that earlier is better — I encourage each of you to establish respite care early — well before it becomes necessary. This way the risks are low if the person doesn’t work out — you can try someone else. In the early stages of a dementia, the respite caregiver is more of a companion and there’s a greater opportunity for the two to create a meaningful connection; it feels less like a “sitter” to the person with dementia. As the disease progresses, the respite caregiver begins a subtle transition into a more direct caregiving role.
- Don’t ask for permission from your person with dementia. You’ll never get it. A person with dementia generally lacks the ability to understand their own needs and limitations, much less yours. This is a decision only you can, and should make. Be assured you are making the best decision on behalf of the person with dementia.
- Frame the arrival of a respite caregiver in a way that makes sense to the person with dementia. If you say, “A caregiver will be coming to stay with you when I leave,” you’ll likely be faced with a great deal of resistance. Nobody wants to feel like they need a babysitter or that they’re giving up personal control. In addition, persons with Alzheimer’s feel a great deal of anxiety around the anticipation of new people, new situations or a change in routine.
Instead, consider saying something like, “I really need some help so Martha is coming to spend a little time at the house.” Or, “There’s a college student who really wants to hear about your hobby, or career as a __________ (fill in the blank); I’m so excited to have him meet you.”
Some caregivers have said it’s best not to say anything in advance and when the new caregiver arrives, they simply invite them in, have lunch, get acquainted, and then after a bit, casually mention you need to run an errand. Get the idea?
- Accept guilt as normal and ever present. One reason, among many, for guilt is that we set unreasonably high standards for ourselves. Yet it’s not practical to think that we need to eliminate all feelings of guilt. We simply need to accept that guilt comes with loving.
- Look for a combination of fee-based services and volunteer (donated) services to help manage the cost. Lela Know Shanks in her book, “Your Name is Hughes Hannibal Shanks”, wrote this: “If I made cost my first consideration, I never would have hired a respite caregiver at all. And I have often had to use my savings to pay for such relief. But that is what savings are for — emergencies; and when the primary caregiver is stressed out it is an emergency.”