Surviving Caregiving with Dignity, Love and Kindness

Yesterday, my husband Les died. No, it was actually a year and 41 days ago, but it feels like yesterday. I’m still wondering how this could really have happened. He was diagnosed with Early Stage Early Onset Probable Alzheimer’s Disease in January 2000 at age 63.

For the first week after diagnosis, I kept saying, “WE have Alzheimer’s,” but then I quit saying that even though it was certainly true. When a person is diagnosed with dementia, there must be someone who is the caregiver. That someone may be hired, but in most cases it is a member of the family.

In many cases, that is the spouse of the person with dementia. Whether that new caregiver knows anything about the condition, she or he is thrust into a role for which they may have no preparation at all.

This article is about how I learned to become a caregiver and what I found to be the 10 most useful things to know in caregiving—not only for myself, but also for Les.

1. Love: Sometimes we don’t have strong feelings of love—when we are tired, scared or angry about the situation. I have heard and read about situations where there is a great deal of anger simmering in a relationship that may make it extremely difficult to be a caregiver. “Brotherly” love may help to get through those difficult times. Inspirational readings can be calming and encouraging. It may be useful also to talk with a clergyperson or a therapist.

2. Learning: Learn as much as possible about the particular kind of dementia your loved one has. There are many books about the subject now as well as articles on the Internet. Ask the doctor for recommendations about ideas for reading. If he or she doesn’t have any, then try the library or Google.

3. Support groups: I cannot say enough about the value of support groups. I learned as much from other caregivers about how to handle situations as I did from anywhere or anyone else. Fellow caregivers can be an absolute goldmine—not only for ideas, but for venting when things are tough. It takes a fellow caregiver to fully understand what you are going through.

4. Humor: This is one of the best ways to get through those sticky situations where you are getting resistance or disagreement. Your own “private” jokes with your loved one may be great for maintaining a bond between you.

5. Diversion: Another way to get through a difficult time is diversion. When humor doesn’t work, coming up with an alternative activity or topic of conversation usually does. It may be something as simple as looking for a favorite object; i.e., “Now where did the coin box go?” or possibly offering a drink of water or a “treat” that is appropriate to the person’s diet.

6. Exercise: This may sound like a nearly impossible thing to do if you are a 24/7 caregiver, but it is not. It is really on a par with being in a support group. Physical exercise is very important for anyone with dementia and their caregivers because it helps with depression, stress and overall health. There are several ways to do this. One possibility is to take your loved one with you as long as she or he can walk. Another option is to leave him/her doing some activity for the duration of your walk or other exercise. Finally, ask a family member, friend or agency person to stay while you exercise.

7. Planning: Time to plan ahead may vary with the extent to which the dementia has progressed when the diagnosis is given. Contact an Elder Care Attorney and have him or her help prepare all the Advance Directives one needs. This includes Power of Attorney, Living Will, Healthcare Power of Attorney and a regular Will. You may also want a Do Not Resuscitate (DNR) Form.

8. Meaningful Activities: While this may seem like an improbable recommendation for a person with dementia, it was definitely my experience that non-pharmacological activities were a key to a slower progression of the disease in my husband and others with dementia. Just as we are given suggestions for activities to “prevent” dementia, I strongly believe that activities can keep those already diagnosed from going downhill faster. It does not have to be huge. For Les, one year it was helping to propagate poinsettias over a year for the Christmas show at a Chicago conservatory and then taking people there to see them all. Other years, it was going to various nearby attractions with a caregiver willing to take him places to keep him seeing new things and active.

9. Dignity: As long as possible, it is important to treat those with dementia with as much dignity as possible. This occurs not only through participation in meaningful activities, but also when going to visit the doctor. One of my husband’s most important messages to doctors and other groups he addressed was that patients do not want to be ignored or separated from the caregiver during discussion. If there were things I wanted the doctor to know that I didn’t want to say in front of Les, I wrote them down and handed them to the nurse before we went in so the doctor could read them. It is not always easy to work around the patient as their abilities diminish, but it is vital to allow them to maintain their dignity, and especially not to treat them as a child. They have a lifetime of experience even if they have lost some skills, so they must be allowed personal freedom balanced with the degree of risk.

10. Respite: This is last, but not least. Even though Les had long-term care insurance so we could have paid caregivers to come in a few hours a day, I did have a stroke after 10 years of being a caregiver. It was only then that my sons suggested we put Les into a nursing home. If you have long-term care insurance, it’s good to use it while your loved one is still home so you can get much needed breaks. If you don’t have that insurance, hopefully family and/or friends will offer to help. If they don’t offer, ask. It you still need help, try your church or social service agencies in your municipality or township.

I have very fond memories of Les even after he was diagnosed with Alzheimer’s. I will never forget that he was still Les until the day he died; he was always “there” after 11 years. Being there for those moments was a blessing for me and our whole family. Dementia is a disease, but it doesn’t have to be a disaster.

This article was first published several years ago