No other disease is really like Alzheimer’s. Someone with cancer or heart disease keeps their personality and their intellect until the end of their lives or almost the end. This is not true with Alzheimer’s Disease.
The Long Goodbye
Alzheimer’s robs the mind first and then the body. The interval between profound memory loss and dying can be years. This causes family members and friends to have to say goodbye and grieve the person they know and love, often when their body seems to be fairly good. Then, when Alzheimer’s Disease robs all of their organ’s ability to function, do people need to grieve again for the body. That is why the term for mourning someone with Alzheimer’s Disease is called the long goodbye.
Because of this ‘double mourning’ people react differently to the final loss – death. Some people seem resigned to the death of their loved one and have long come to terms with the effects of the disease. At the funeral, these people may not even seem sad. That is because they have already gone through the mourning process and this is just the burial of a body of someone they have already said goodbye to in their minds. Others may be distraught about their relative with Alzheimer’s dying. It is because their grieving process is not complete and they are still mourning the person they loved.
Either reaction is fine and normal. The thing about rules of grieving is that there are none. We all process the loss of a love one in a different way. As long as grieving doesn’t cause long-term depression that affects functioning it is normal. Being sad every time you smell your mother’s favorite perfume is normal, not being able to get out of bed to work two months after a death is not normal.
Why Support is Different from Other Diseases
When someone gets a bad diagnosis, people bring over casseroles, offer rides, will let out the dog, etc. Alzheimer’s is so slow but so insidious, that no one offers to help. At the time of diagnosis, the sufferer is not so affected and able to take care of many or all of their needs. Once someone is to the point of needing real help, most people have forgotten about the diagnosis or don’t know how to help. This leaves family alone to deal with the consequences of caring for their relative.
As the disease progresses, those who would visit often stop because they don’t recognize the person they once knew and don’t know what to say. Please don’t do that. Even holding hands or playing someone’s favorite music (music is one of the last functions we lose) is helpful.
How you can help a family member
Offer to come over so they can go out on errands or appointments, see a friend or just take a nap. Caregivers need some alone time to refresh and face what lies ahead. Don’t abandon someone with Alzheimer’s or their family. If you can’t help in this way, offer to visit while the caregiver is there. You can also make dinner (don’t ask just tell them you are doing it), run errands for them or just listen. Never forget that Alzheimer’s has consequences not only for the sufferer but just as much, or more, for the family. Small gestures from friends an families to help deal with the consequences of Alzheimer’s goes a long way.