Ask a Care Consultant: Holidays and dementia

The holidays can be a challenging time for families coping with dementia. Planning ahead and knowing what to expect can make this time less stressful. It’s also important to adjust your expectations—don’t try to put too much on yourself or on the person with dementia.

Planning ahead 
Communication is key here. If you have people coming in from out of town you may need to clearly communicate with them regarding your caregiving situation, and what the person with dementia is and is not capable of. In the early stages of dementia, your loved one may seem to not have changed very much, but may have trouble with large groups or following a conversation. Telling visitors ahead of time that they can help by being patient, and not interrupting or correcting the person with dementia, will help prevent frustration and hurt feelings.

If the person with dementia is in the later or middle stages, there may be significant changes since the last time the visitors saw him or her. These changes can be difficult to accept, and it can be helpful to prepare the visitors in advance so that they know what to expect. For example, if the person with dementia might not recognize them it can be less hurtful if they understand in advance that this is a part of the disease process.

Don’t take on too much 
Holidays can be stressful even without the added responsibility of being a caregiver. Do not be afraid of scaling back your celebration, and delegate, delegate, delegate. Clear communication is key here, as well. Consider scheduling a conference call with other family members to divide up responsibilities, and to set appropriate boundaries on what you can and cannot do. Consider scaling back to a smaller celebration to avoid overwhelming yourself and the person with dementia.

Focus on meaning 
Look for ways to involve your loved one in meaningful activities that they can enjoy. Singing along with holiday songs can allow people even in the later stages to connect and feel part of the holiday. Looking through photo albums of past holidays and reminiscing with your loved one can be a soothing and meaningful way to spend time together. Perhaps they can help set the table or tie the ribbons on the gifts. Look for ways that your loved one can be a part of the celebration by scaling down activities to a level that is manageable for them.

Celebrating in a facility 
When a family member is in a residential facility, people often want to know if it is a good idea to bring them home for the holidays. Consider carefully if this is wise for you and for the person with dementia. Sometimes changes in routine can be upsetting for the person with dementia, and they may not do well in a crowd of noisy people. Think about joining your loved one at the facility in their holiday celebration.

Take care of yourself 
Be realistic about what you can and cannot do during this stressful time. Caregivers often feel guilty that they are not “doing enough” for the person with dementia and for their families. Holidays can make these feelings even harder to deal with when we have so many expectations about how things are supposed to be. Try to let go of these expectations, and give yourself some quiet time to grieve if you need to. As much as you can, focus on the moments of connection and happiness that you share with all your family members, and give yourself permission to not do it all.

National Family Caregivers Month: Verda’s Story

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. We want to honor the 15 million family and friends currently providing care for someone living with Alzheimer’s disease in the United States, including the nearly 590,000 Alzheimer’s caregivers right here in Illinois. In this article, we feature Verda Gochee, who is a caregiver for her husband who was recently diagnosed with the disease. 

“I am a caregiver for my 59-year-old husband, Darren, who was diagnosed with Alzheimer’s Disease two years ago.  I retired from my office job at that time because the neuropsychologist that diagnosed his condition felt he needed 24/7 care. The closest “adult day care” facility to our house was 15 miles away, and in the opposite direction of my job.  I didn’t feel leaving him home alone as viable as we were getting scam phone calls from the “IRS” on a regular basis. I could not be sure he would not give our credit card or bank information to a scammer or let a “bad” person into our house.  I had originally planned to work until at least age 70, but ended up retiring at 65.

We live with our 25-year-old son in rural DeKalb County in a century-old farmhouse that my husband’s family has owned for more than 100 years.  Our son is the 6th generation to live in that house.  We added a first-floor bedroom, bathroom with a shower, laundry and attached garage with an inside ramp to the house last year with the hopes of keeping my husband at home, where he would like to stay as long as possible. 

Darren is usually awake by 2 a.m. every day and wanting to see if the newspaper had been delivered yet.  He still looks at the paper but does not really comprehend as much of the information as he used to.  He is able to dress and shower by himself but, I can see him getting more anxious about these activities.  His day revolves around getting the newspaper, which is delivered at about 4:00 a.m. and the mail, which is delivered about 2:00 p.m. He has lost most of his concept of time, so he is frequently asking if it is time to get the newspaper or the mail.

We have an elderly dog that we frequently take for walks, sometimes both of us and sometimes by ourselves.  We generally shop for groceries once a week and sometimes just go for a drive. We play “Sequence” most evenings.  Sequence is a board game played with two decks of playing cards. He usually matches the correct number and color, black or red, but often mixes up the suits, club for spade or heart for diamond.  Darren does fairly well when playing Mexican Train dominos with a small group of family. The Mexican Train dominos not only have spots but the spots are color coded to make it easier to match the number.  We play dominos with all train lines open. I try to do Suduko and Celebrity Decipher from the newspaper daily.  I read magazines but have found I fall asleep too easily to read novels anymore.

Currently, I am managing the caregiving responsibilities without hired help.  When help becomes necessary, I’m afraid it is going to be difficult to keep paid help, especially in the wintertime because of our rural location.  The probability of being able to keep him at home through the course of this disease now seems very slim.  It will cost several thousand dollars a month to place him in a long-term care facility plus maintain our home. Our savings, which seemed like an adequate nest egg a few years ago, now seems to be waving goodbye as it will disappear quickly when Darren has to be placed in a care facility.”