Here are some of the strategies I discovered that made caring for my mom a bit easier. Some address specific problems, like incontinence or lack of mobility. Others contain more general information and suggestions that may help you keep your loved ones “present” and more aware of and even involved in the life going on around them.
But remember: your loved one is unique in the world, unique in all of creation. Alzheimer’s doesn’t suddenly change that individuality. As the saying goes, “If you’ve seen one person with Alzheimer’s, you’ve seen one person with Alzheimer’s.” No two people experience the disease in exactly the same way. So a care strategy that makes life easier for one Alzheimer’s patient and his or her caregiver may not work for you and your loved one.
I’ll add more tips a few at a time. I pray you find them helpful.
And I urge you to use this space to share your own successful caregiving strategies with readers. Simply type them into the “Reply” box below. We will all benefit. Thank you!
In the Beginning
- The first hints that a loved one has Alzheimer’s are sometimes revealed in the changed behavior of a spouse or friend who is trying to adjust to your loved one’s new moods and actions.
- Confusion and forgetfulness are not always the first symptoms of Alzheimer’s. Abrupt mood changes, hostile behavior, reluctance to drive or go out alone, unreasonable fear, lack of interest in personal hygiene, occasional incontinence, language difficulties, the same questions repeated again and again – these are some of the many other signs that might signal the disease.
- Any of the symptoms associated with Alzheimer’s may be caused instead, or also, by other ailments or conditions. That’s why it is critically important to acknowledge difficulties like incontinence, confusion, language difficulties and the rest, and call them to the attention of a primary physician in a timely manner. Don’t assume your loved one’s physician is already aware of such changes, even if she tells you that’s the case.
- Symptoms may be very problematic one day and gone the next, especially in the earliest stages of Alzheimer’s.
- My mother’s confusion was greater when she awakened in the morning or after a nap during the day. Especially in the beginning, keeping her alert during the day and involved in the activity of the moment seemed to make her feel more secure and greatly increased the likelihood she would eat at meals, accept help with dressing and, in general, work with us instead of against us.
- While it is difficult to predict with certainty what will cause distress to an individual Alzheimer’s patient, even early on you will see that certain activities and situations tend to provoke symptoms. Situations like going to an unfamiliar place or being in the company of strangers or in a crowded room were triggers for my mother.
- Once Mom was in an emotional state, trying to reason with her was useless. The best strategy was to agree with her statements and desires as far as possible. For example, it was fine for my mother to go for a walk in a strange place as long as she would wear shoes and as long as I went, seen or unseen, with her.
- If there is no way to accommodate your loved one’s desires, or no way to accommodate them safely, you’ll need to be prepared to take the action necessary to keep him/her safe. If you feel you would be unable to physically restrain your loved one if it became necessary, it’s best to have a plan in place. Have a neighbor or friend or family member you can call for immediate assistance, or, if all else fails, be prepared to call the police for assistance. Perhaps such a situation will never arise, but you will be able to care for your loved one with more confidence and calm if you have faced the possibility in advance and are prepared either to take action yourself or to get help.
- For me, one of the first and most difficult challenges of living with someone with Alzheimer’s was determining when she was speaking about reality and when she was speaking out of her confusion. My father and I learned eventually to treat everything Mom said as real, since, in her perception, it was real. Arguing with her or trying to persuade her otherwise never worked. At best, it confused her more; at worst, it made her furious with us. So we acted as though we believed all she said was true. If we needed to double-check – as, for instance, when she said a doctor called and told her an appointment had been cancelled – we did it out of her ear-shot.
- Smoking and Alzheimer’s do not mix. No matter how careful you are, there will be problems – perhaps even life-threatening problems – from fallen or dropped cigarettes.
Getting a Diagnosis – Getting Help
- For as long as I can remember, my mother was what I would call a “difficult” person. Keep in mind that, especially in the early stages of the disease, it may be difficult to distinguish between the unreasonable behavior of a difficult person and the irrational behavior and confusion of someone with Alzheimer’s. Diagnosis may, therefore, be more difficult or take more time.
- Be aware that your doctor may be more inclined, especially at first, to put more weight on what he sees from his patient than on what he hears from you. If you find that’s the case, you’ll want to be persistent in documenting for him the behavior he doesn’t see in his office. And you’ll need to make yourself heard.
- Depression may sometimes precede or accompany Alzheimer’s, but, even for someone with the disease, the psychiatrist who treated my mother said it is never normal. Do not hesitate to consult your physician about the possibility your loved one is suffering from depression in addition to Alzheimer’s.
- Even my mother’s most extreme confusion and irrational behavior did not convince my father that he should consider the possibility she had Alzheimer’s. Be aware that it might require time and patience to help a loved one accept that diagnosis.
- In the beginning of my journey with my parents down the Alzheimer’s road, I never considered how long the trip might be. I acted as though every difficult situation we encountered was a crisis – we must solve it, I thought, and then we’ll never have to deal with it again. I didn’t pace myself. I wasn’t prepared, emotionally or physically, for the long-term nature of the illness. If I had been more educated about the disease, I hope I would have taken steps immediately to secure help of some kind for my parents. If not for the present, then for later, when the illness might bring burdens we couldn’t bear alone. Education is available, from individuals or through day-long caregiver seminars, in books, on tapes, on the internet. In my case, I was so panic-stricken by the time I went to a caregivers’ seminar, I wasn’t able to take full advantage of what I heard. I urge you to get informed early. Information really is power.
- Some of the most important information you need has to do with your options for caring for your loved one. There are options. I never acknowledged that fact. There are options. Believe it early and seek them out.