Alzheimer's 12 Things not to say

It is time to discard the old clichés that have been imposed on our thinking process. I would like you to think about some of these statements before you use any of them. More important, I want you to feel passionate enough to challenge others when you hear them say them.

1. The phrase; "The Burden of Caregiving," is used almost exclusively to describe the care of our elderly and it's association with Alzheimer's Disease is accepted as fact. While the tasks are difficult for those facing this illness, the constant imprint of this care as burden serves little purpose except to wear down the caregiver. The use of that phrase demeans the act itself and it demeans the caregiver by default. How does one provide a loving and life affirming environment for someone going through this disease when everyone characterizes your resolve in terms of drudgery? Child rearing is a challenge and the care of our elderly is also a challenge. We have to stop denigrating the care of our elderly as being something out of the ordinary. Our elderly deserve the same regard and love as do our children who are just as dependent upon us for help.

Burden: "That which is borne or carried; a load. That which is borne with labor or difficulty. That which is grievous, wearisome, or oppressive; as, my burden is greater than I can bear. The carrying of loads; as, a beast of burden." Webster's Dictionary

2. "Lets face it none of us want to be a burden to our children." None of us want to be a burden to anyone. We all hope to die without needing someone else to care for us, and while this is a universal desire, the fact remains that few of us will have that luxury. Most of us will need to be tended to by someone else before we die. Whether that someone else is a family member or a paid caregiver is the reality families dealing with this illness face. What is too often offered by the 'helping community,' where our people are concerned, is encouragement to disregard these basic needs and wants. The justification for this behavior is that our people don't know who we are anyway, so why would our care matter? In a recent newsletter published by the Rehabilitation Counseling Association, it was offered that it does matter. Those of us in the professional ranks have an obligation to consider the preferences in care of a dementia patient with the same fervor as we defend those who still have their thinking process intact.

3. "No one should have to sacrifice their lives for another." We shouldn't but we do all the time. Caring for another human being is about unconditional love it isn't about being a patsy. Those of us who take on the challenge feel it isn't a sacrifice in the negative sense of that word. Out caring is about commitment and obligation. Whatever our reasons, they are outs to live with. They are not for anyone else to judge.

4. "Your family member would never want you to do this for them, they would want you to get on with your life." Aside from the question as to whether anyone living on the outskirts of this care experience knows anything about what our people 'want,' I hear this phrase repeated too often to count. I actually heard it said to an 85 year old man who had just put his wife of 60 years in a nursing home. The support group leader failed to relate to his grieving and her comment only angered him. It certainly didn't have the calming effect she expected. I ask you, just what is 'getting on with your life suppose to mean to a caregiver who's family member is still alive? That statement is little more than an admonishment to those of us who continue to feel for our people in spite of this disease. There is nothing inherently comforting about those words.

5. "Your family member should be in a nursing home. It's better for them." Too often this is the only option offered a caregiver as if you drive them up and drop them off and your obligation is over. Unfortunately, institutionalization isn't any option for vast numbers of caregivers. One must have some financial backing whether it is personal money, insurance money or public aide money. Large numbers of us have none of these financial options. Placement is hardly a simple matter for family members who not only have feelings of obligation to deal with, they also have grieving issues that go largely unnamed because no one seems to recognize grieving when they see it. Nursing homes serve an important need. They are there for those who cannot be cared for at home. Caregivers must be allowed exploration of all care options when they ask for help. In this way there is less separation trauma should nursing home placement become real.

6. "It is so hard watching someone lose their dignity." Dignity is in the eyes of the beholder and has nothing to do with whether or not a person can dress, feed or toilet themselves. Those are simply tasks, they are not a measure of a person's worth as human being.

7. "You will want you children to remember their grandparent as they were, not as they are now." This is used as an excuse to justify not visiting an elder frail member of the family. Generations of people before us shared the aging and death experience with their elders as a continuum of the life cycle without any know perversion of their memories of them during happier times. We respond to what we are told to expect. If there are no expectations for connections, none happens. However, vast numbers of us experience a sense of completion and peace by being able to share in the last days with a family member. Some of us learn to see it as a right of passage, of a necessary part of our own growth and as our role in helping our family member meet their death with dignity and grace.

8. "Why visit 'him' so much, he doesn't even know who you are anymore." I maintain that as long as we know who they are, that is all that matters. We don't wrestle with these issues in working with infants. We have learned that people in a coma benefit from the presence of family members. We also know that infants die when they are denied nurturing. They languish and they die. Are elders, particularly those with dementia, less needful of human contact, touch, and tender loving care?

9. "Don't feel guilty." If only it was just that simple. I believe people deal with grieving issues with this disease. I believe the use of the word guilt is over used and over worked. It really doesn't apply to most of what we caregivers experience with each and every decision we make as we watch our people fade. The tears, the anger, the frustration that is expressed in these circumstances evolve out of a sense of loss and knowledge that the losses will continue. It evolves out of the recognition that we have begun to say good bye long before good bye happens. We need permission to feel what we feel, and guilt is really nothing any of us see as a positive attribute. Caregivers need options, encouragement, and acceptance. What they don't need are mindless clichés.

10. "You should get out more often." Isolation, lack of money, loss of friends, and care obligations, often leaves the caregiver with no where to go. The bottom line is that if the family member isn't taken care of, the caregiver cannot leave to go anywhere. If you are going to toss that one off, at least toss it with some suggestions on adult-day-care, and volunteer options. And here's a novel thought, volunteer yourself.

11. "Enough about your family member, i want to know how you're dong." When well meaning helpers exclude the family member in their attempt to focus on the caregiver's needs, that exclusion often serves to isolate the caregiver even more. The caregiving experience tends to entwine the parties in ways that are often not recognized or valued by outsiders. A bond forms that is very deep and often very complex.

12. "You must be so relieved it's over. (After the family member has died). A caregiver who has lived through a long-term illness with a family member is still going to experience mourning when that person dies. The grieving process they face may be different from those who face sudden death, or the death of a child, but the loss is still real. To diminish the event is to diminish their effort and the life of the family
member.

by Beverly Bigtree Murphy

Caregiver Tips for making it through this holiday

If you are like many of us the holidays add extra stress. If you are a caregiver the added stress of holidays may be more than you can take.

With a little forethought, some of that stress can be alleviated.

1. If your loved ones families or friends would like to visit for the holidays, politely request that they set up a time with you that is convenient for you and your loved one. Visitors mean well, but can show up at some of the most inconvenient times.

2. If family members are stopping by to see your loved one, but are celebrating else where, ask them if they would mind bringing a holiday dish that your loved one might enjoy. It will save you from having to cook the entire meal!

3. Give yourself a holiday treat and have a beautician come to your home for a change. If your own beautician can not come to your home, I am sure she knows of someone who will.

4. Make plans to have a house cleaner come in before the holiday. This will free you up time to do some of the extras.

5. Simplify. Some traditions must be kept, others can go on the way side this year. Perhaps you can scale back just a bit. Seriously consider what matters most. Do those projects first leaving the least important projects on the bottom of the to-do lists. If you don't get to them, know you have done the most important ones.

6. Cut up all veggies and special ingredients for your meal a day or two before the holiday. This will save you tons of time! Pies can also be made ahead of time.

Please feel free to add a comment, if you have a stress relieving tip for the holidays!