My 78-year-old husband has been diagnosed with early-stage Alzheimer’s since 3/3/16. It’s been a year since we saw the neurological psychiatrist, but our next appointment is in a week. That has brought a lot of his emotions about living with the disease to the surface, prompting a long and at least temporarily productive conversation. He was worrying about what I might say about his progress during the Dr. visit, but we were able to turn it around and talk about what he would say, because many of the things I had noticed, he had noticed, too, but had been hesitant to talk about. This change centered on him agreeing that it would be more helpful for him to be honest with himself and with the Doctor, rather than denying that anything has changed.
One thing that helped me to steer this conversation in a positive direction was an article I’d read recently on the Alzheimer’s website titled “How Alzheimer’s affects relationships. You can find it here. It contains a little video made by a man who has the disease, and several quotes from others also from that perspective. It emphasizes that the person with Alzheimer’s has a choice as to how they react to and with the people around them, especially their spouse or “partner caregiver.” “Your ability to live well with Alzheimer’s depends on how you choose to continue to be a partner in your relationships.”
In our relationship, I think both of us tend to swing back and forth when it comes to looking at living with the disease through our own eyes and experiences or through the eyes of our partner. I’m certain we will be having a similar conversation in the future, but at least we have cleared the air for the present, and hopefully long enough to get us through my husband’s annual evaluation unscathed.
Tips from the Article
I encourage you to read the article and watch the short video, whether you are the person who has Alzheimer’s, a spouse or another caregiver. I’ll touch on some of the main points here, with the hope that they will have a positive effect on a relationship in your life, whether it’s you or someone you care for who has an Alzheimer’s diagnosis.
Remember that your loved one is still the same person he/she was before the diagnosis.
Even though you may be uncertain about how to respond to your new circumstances at first, maintaining a meaningful relationship throughout your experience with Alzheimer’s can help both parties stay physically and emotionally healthy.
Your loved one may find it increasingly difficult to participate in social activities or interactions that were once enjoyable for both of you. Recognize that anxiety, frustration or loss are common emotions that may come with changes in the ability to follow a conversation, stay focused with competing background noise, or have enough energy to participate in social activities. Do what you can to stay active and socially involved, even if the nature of the activities has to change.
Expect and accept role changes.
As your partner’s abilities change, there will be changes in both of your roles and responsibilities. Here are just a few roles that may have to change over time:
- You may have to do most of the planning and decision making, especially about financial matters.
- Specific functions that were once your spouse’s responsibility may have to be assumed by you. “The hardest thing that I’ve had to overcome is realizing a lot of what I used to do has been passed on to my wife.” Person living with Alzheimer’s
- You may have to do all or most of the driving.
- If your spouse was still employed, you may have to assume the role of bread-winner.
Even though you may have good intentions, you will have to take care not to provide help that feels invasive or is unnecessary.
For the person with Alzheimer’s, it can be difficult to do, but adapting to changes and accepting help from others can be a way to acknowledge the value their assistance brings to your life. The more you can be involved, the fewer negative feelings you may have.
Ways to keep your relationships positive and productive.
- Be open about your feelings. Share your experiences and feelings about living with the disease, both as the patient or the caregiver.
- Be specific about how you would like to continue your relationship and how you would like to be treated.
- Learn how to ask for help. While it may seem like a sign of weakness at first, asking for help when you need it may help you maintain your independence and remain in control.
- Focus on relationships that are supportive, and show your gratitude for the people you love and appreciate.
- See yourself as unique and human, and continue to do things that feed your sense of self.
- Uncertainty, frustration or reduced confidence may lead to stress and changes in feelings toward your partner. Your partner may experience some of these same feelings. Both of you will need to make adjustments.
Tips from people with Alzheimer’s
- Remember that your care partner or others close to you did not ask to be put in this situation either. They have fears and frustrations, too. Working together may make the situation much better.
- If longtime friends shy away, remember your best and real friends will stay with you, Invest your time and energy in them.
- When you feel a loss of equality in a relationship, let the other person know what he or she did and how it made you feel.
When it comes to relationships, it’s important to consider feelings on both sides. The Alzheimer’s Association and other groups provide counseling that can help. Support groups consisting of others in your situation can also provide a release for emotions and ideas of how to make your life-path easier.
by Marti Lythgoe, Dakota Home Care, Writer/Editor