Hey Passengers welcome aboard and back for another session on the good Doc’s couch. I really believe this was one of our better sessions. I would humbly encourage you to invite anyone you know to the train to review this interview. I found the information to be incredibly enlightening. So, let’s mozey on back to the Doctor’s car, oh and stop by the cafe car and bring me some salted peanuts in the shell and a diet coke please…
Kick off the mood music selection and I hope this helps
Dr. Dee: So, Chuckie, one of the passengers has made a special request to discuss coping with a family member who has Alzheimer’s disease. Are you game?
Chuckie: “CALL THE POLICE!”, not only is this woman a brilliant Doctor but, she reads minds as well! Come mere gurl! Gimmie a hug!
Chuckie: Yes, it seems that this topic has been a theme in my life in terms of coming in contact with friends dealing with this. How shall we begin?
Dr Dee: First of all I think we ought to talk a little bit about what exactly Alzheimer’s disease is. Alzheimer’s disease is a form of dementia. Not all dementia is Alzheimer’s but Alzheimer’s is characterized by dementia. This is a disease where a person gradually develops memory problems which are more and more severe. They begin by forgetting little things, and as the disease develops, they forget procedures we take for granted such as brushing their teeth getting dressed, and they forget people close to them and even their own name, as well as other personal bits of information. Usually the disease takes a slow course, and develops over several years.
Chuckie: I can see how this would be really sad, and frustrating for a family member.
Dr. Dee: Yes this can be very, very frustrating. In fact, the passenger who suggested this topic mentioned that from her perspective, dealing with a family member with Alzheimer’s is even more difficult to cope with than dealing with someone with a terminal disease.
Chuckie: Wow. That’s pretty heavy stuff. Why do think that might be?
Dr. Dee: Well, as with other situations, Alzheimer’s disease involves coping with a great deal of loss. But unlike divorce, where that person is still the same person you were married to, only they’re just not there anymore, and unlike most terminal diseases where that person may have physical decline, but is still essentially the same person, Alzheimer’s disease involves a relatively physically healthy individual, who looks the same as you’ve always known in most cases, except that they’re getting older. When you look at this person who looks the same as they’ve always looked, you expect them to know you as they’ve always known you, and behave, as they’ve always behaved. But they don’t. And they don’t because they are losing their memory and memory forms the basis of who we are. Not only that, Alzheimer’s is a slow moving disease. So, just as you get to the point where you feel you have accepted some loss of who that person was, something else of that person you know and love, fades away, and you are right back at the beginning again, having to mourn the loss of something new, that is now no longer there.
Chuckie: So, what can a person who has a family member who is suffering with Alzheimer’s do? How can they cope with this constant series of losses that can apparently go on for a number of years?
Dr. Dee: Chuckie, this is one of those cases where a really good support group can be a life line. In a support group for Alzheimer’s caregivers, a family member can meet with others who know exactly what the family member is going through. They can also offer helpful tips for coping with the little changes.
Chuckie: What kind of changes are common for family members of patients with Alzheimer’s?
Dr. Dee: Two major kinds of changes have to be dealt with. On the one hand, dealing with a family member who has Alzheimer’s requires changes in role and relationships. For instance, the Alzheimer’s patient may have been the one who handled the finances or the taxes or the cooking or the housekeeping. But gradually they become unable to carry out those roles, and someone else has to step in and begin to do them. This can be overwhelming and frustrating for the family member. Sometimes they have to learn completely new skills, such as in the case of dealing with finances. Sometimes it involves leaving their own job to devote themselves to full-time care of the Alzheimer’s patient. This can also be quite frustrating because jobs can define people in many ways, and to have to give that up can affect a caregivers self-esteem. Sometimes caregivers feel guilty about these shifts in roles. At other times, the may feel angry and resentful, that they now have to give up significant portions of their lives to become a caregiver. The other major change that goes along with that, is the process of letting go of the person you once knew and loved, and beginning to accept the person who is evolving before you. And that person changes from day to day and year to year, so again, this process of letting go and accepting can go on for years.
Chuckie: Is there any cure for Alzheimer’s disease? Can anything be done to help patients with Alzheimer’s?
Dr. Dee: Unfortunately, no, there is no cure for Alzheimer’s disease. But there are a few treatments that are available. However, the treatments, only appear to slow the progress of the disease. There are lifestyle modifications that can help in the earlier stages of Alzheimer’s. As a person becomes more and more forgetful, it may be helpful for family members to create simple scrapbooks including pictures of loved ones with a few words, describing who they are, such as a picture of a daughter, with the words, “your oldest daughter” underneath. Or even a picture list in the bathroom, describing what needs to happen in there, such as brushing teeth, bathing, toileting. Of course, as the dementia, increases, they may likely forget exactly how to brush teeth, or bathe, or toilet appropriately. Simplifying the choices that an Alzheimer’s patient has available to them can also be very helpful. For instance, if they have trouble deciding what to wear, cleaning out the closet of everything but 3 or 4 pairs of pants, 3 or 4 tops, 3 or 4 dresses, and a couple pairs of shoes, may be just what the doctor ordered.
Chuckie: What do you advise family members to keep in mind as they deal with loved ones who are gradually forgetting everything about who they are and what their lives have been like?
Dr. Dee: We need to always keep in mind that Alzheimer’s disease is no picnic for the patient either. They don’t suddenly wake up with dementia. It’s a gradual process where they often recognize that they are becoming more and more forgetful, and the world is gradually becoming more and more confusing for them. So, when they become angry or react in ways that don’t make sense, its helpful for family members to remember that the patient is often confused and frightened, and the world no longer makes much sense to them either. They are not intentionally trying to be hurtful and difficult, they simply can’t help what is happening to them. And, unfortunately neither can anyone else. If family members can find a way to reframe the behaviors of the Alzheimer’s patient in a way that takes into account their own confusion, helplessness, and fear of this strange world developing around themselves, it can not only change the way a family member behaves toward the patient, but it is often helpful for the family member as a means of coping, as well.
Chuckie: Thanks for addressing this impromptu topic. Any parting words?
Dr. Dee: Sure. I can’t stress enough how important it is to get connected to an Alzheimer’s support group. There are major changes that have to come, over the course of dealing with the family member with Alzheimer’s, including eventually placing them in residential care. This can bring about all kinds of feelings in family members, including guilt, anger, and fear. Having the support of others who have been through that fire, or are going through it themselves, can be a major means of coping.
Chuckie: Doc, as far as I’m concerned you knocked this one out the park. I know that many will be blessed by your willingness to let us partake weekly of your knowledge. May your rewards be many in Heaven.
Dr.Dee: Thanks Chuckie, my pleasure.
Chuckie: Oh, Doc…one last question.
Chuckie: Knock, Knock…
Chuckie: Knock, Knock
Dr.Dee: “SIGH!” “…ok who’s there”
Chuckie: DOC! We need to get you some help! You are sitting here looking right at me and you axe, “WHO’S THERE?”
Dr.Dee: BOY BYE! GET OUT!!!