Caregivers Corner – An Open Letter to Caregivers

April 18, 2008 by  
Filed under ALZHEIMER'S

Dear Caregiver,

Thank you for the sacrifice that you make to care of me.  Thank you for preparing my meals, driving me to doctor’s appointments and keeping me safe.  Thank you for keeping me clean and for handling my financial affairs.  Thank you for trying to make me a part of family activities and thank you for the gifts you give me, even though you are not sure that I know it’s a special day.

This disease has taken much from me.  So, I can’t explain things like I used to. But just because I can’t talk doesn’t mean I am not grateful.  Often when you look at me there is a distant look in my eyes.  It’s those time that I am most afraid.  I fear that caring for me will wear you out.  I fear that I am a burden to  you.  I fear you’ll throw up  your hands and give up.  I fear this prison in which I am trapped.  And yes, I fear death.

No one has talked to me about what is wrong with me, but I see the looks and hear the whispers.  I know it’s the “A” word.  Alzheimer’s.  I don’t know a lot about it, but I’ve never heard about remission or anyone being cured of it.  So, I know that these prison walls will just get more and more confining.  Maybe I’ll get to the point that I dont even recognize that I am in prison, but for now, I know and it’s hard.  It’s really hard.  I used to be the one giving the orders, running things and being in charge.  Now, I am here.  Sitting.  I am here.  Wandering.  I am here.  Wondering.  I am just here.

To you, my special caregiver.  Thanks so much for your care.  I know it’s not easy.  Sometimes I get angry and I lash out at you because you are closest to me.  I want you to make it all better, but I know you can’t.  I don’t mean to hurt you. 

And if it happens like I’ve heard, there may come a day that it I don’t remember you.  I may not know you at a given moment, but I will always love and appreciate you.  Hold on to that.  This disease may take my memory, but it won’t take my heart.

I love you more now than before my illness. 

 You are all I have. 

With Love,  The (grateful) Alzheimer’s patient

How Alzheimer’s Patients Grieve

April 9, 2008 by  
Filed under ALZHEIMER'S

For the last two days, I’ve talked about grief.  On Monday, I summarized and gave an introduction to caregiver grief and on Tuesday, I discussed specifically how Alzheimer’s caregivers grieve.  The premise of both posts was that grief occurs because of loss, not only because of death.  Therefore, as relationships, roles and responsibilities shift while the affected person progresses through the stages of Alzheimer’s disease, it is natural for the caregiver to begin grieving WHILE the person for whom she is caring is still alive and “well.”

There is a significant body of research on grieving, the stages of grief, caregiving and caregiver grief.  There has been much less research done on the how the Alzheimer’s patient grieves.  Part of the problem is that as the disease progresses, the affected person’s ability to articulate diminishes.  Thus, the opportunity is lost for the patient to express his or her feelings and frustrations with what is happening.  Another issue is that caregivers become so overwhelmed with day to day activities and problem solving that they don’t stop and think that as they are grieving, so is the one for whom they are caring.

Yet, we must STOP and think.  If it hurts us to see our loved ones “losing it,” how much more does it hurt them?  At first, they may dismiss the symptoms as stress, senior moments or just plain forgetfulness.  As time progresses and they realize that they are not getting any better, they must get very afraid.

Imagine how you would feel if you were to all of a sudden get lost going someplace you have been going for several years?  What must it be like for your children to tell you its time to stop driving?  What if you woke up and a “stranger” came into your room to help you get ready for the day? 

We don’t know a lot about how the Alzheimer’s patient grieves, but we know that grief is related to loss and before the Alzheimer’s patient loses his memory completely, he KNOWS that something is desperately wrong and he grieves the loss of his status and independence.  He grieves the loss of his position in the family.  Because the disease progresses s-l-o-w-l-y over a number of years, the affected person has time to feel the pain and recognize that things are different.  The family may have chosen to share the diagnosis and so he knows what is coming next, or he may not be aware of the diagnosis. 

So, as you navigate the waters of caregiving, assure your loved one that you will always be there.  Give him lots of hugs and smiles.  Remember, just as you grieve, your loved one is also grieving.  To what extent will depend on how early the diagnosis was made and whether or not the family shares the details of the diagnosis.  Either way, your loved one will certainly experience denial, anger, bargaining, depression and acceptance.  For the person affected with Alzheimer’s disease, “acceptance” may be more of a resignation that he has no control over what’s happening, than a conscious understanding the reality.   His feelings and emotions are compounded by the physiological changes in his brain and the resulting confusion and forgetfulness.  Hold him, love him, touch him and reassure him that you will be there to help him through this time.

How Alzheimer’s Caregivers Grieve

April 8, 2008 by  
Filed under ALZHEIMER'S

  I talked with a friend yesterday. She could relate to the paradox of caregiver grief.  Being sad, on one hand, as she watches the disease slowly takes her mother away and on the other hand, being grateful that she still has her mother and is able to connect with her, from time to time. The conversation reminded me that caregiving and grief tend to go hand in hand; because caregiving usually causes a role-reversal, or at best a shift in previously established roles.  Yesterday, I talked about the fact that caregivers begin greiving while their loved ones are still alive. Today, I’ll talk about HOW caregivers grieve.

You have probably heard of Elizabeth Kubler Ross.  Regarding end of life issues, she was the uncontested expert.  She started out studying those who were diagnosed with terminal illnesses and she looked at the ups, downs, phases and stages they experienced.  Eventually, she discovered that those who have lost a loved one experience the same stages.  It is now widely accepted that the stages of grief that she described are applicable to grief associated with a myriad of losses.  With that foundation, let’s look specifically at caregiver grief that begins prior to the death of person receiving care

The word stage is a bit of a misnomer, in that it implies that you neatly move from one to the next and then to the end.  That is NOT the case with grief, rather you move in and out and back and forth through the stages. It’s not neat or clear cut, but at least you can put a label on what you, as a caregiver are experiencing, as you grieve while your loved one still lives.

Denial-“I can’t believe this is happening!”  You just cannot wrap your reality around the fact that your loved one is losing the battle against the monster, Alzheimer’s disease.  A part of you believes and holds on to the fact that, “we’ve had hard times before, everything will be just fine.”

Anger-this is when you come to the harsh reality that everything is not fine and you don’t like it at all.  I remember I wanted to punch someone.  I wanted someone to pay for and explain this horrible thing that was happening. Your anger can be directed at the affected person, your spouse or children, other family members, anyone in your path or even God Himself.

Bargaining-You know you are trying to strike up a bargain when you are willing to put your elderly and frail loved one through a barrage of uncomfortable tests or into a clinical study that clearly won’t provide relief; or when you scour the internet and medical journals searching for new treatments and go to specialist after specialist looking for the “cure.”

Depression-Now you get it.  Your reality is that your loved one is very sick and is going to ultimately lose the battle against Alzheimer’s disease.  As a caregiver you may get physically ill yourself, you may cry a lot, seemingly for no reason.  You may socially and spiritually isolate yourself and pull away from friends, family and your faith for a while.

Acceptance-I’d love to have a conversation with Mrs. Kubler Ross on this one. I mean, acceptance has a bit of a positive ring to it.  We accept the illness and the impending death because we don’t have a choice, not because it’s an Emmy award that we have long coveted.  At any rate, our minds and breaking hearts eventually come to grips with the fact that, “there is a time to die.”

Again, the paradox here is that you are going through all of these stages while you go about the business of caregiving.  While your loved one is alive and with you; it feels strange and wrong, but in truth, its right.  Grief, at its core is about acknowledging a loss and even though your loved one is still alive, the relationship is changing and you are losing your loved one.  Denial, anger, bargaining, depression and acceptance are your heart’s response to the losses you are experiencing.

Tomorrow, I’ll talk about the grieving Alzheimer’s patient.

Alzheimer’s Disease and Caregiver Grief

April 7, 2008 by  
Filed under ALZHEIMER'S

There is no getting away from it, battling the monster, Alzheimer’s disease causes grief on a number of different levels.  It’s extremely complicated, but it’s also necessary to acknowledge and work through.

Alzheimer’s related caregiver grief begins long before the affected person gets near death.  That in and of itself is problematic because you may feel guilty for grieving when your loved one is still alive and maybe not even near death as yet.

The first thing to remember is that grief is not just related to death, it is related to LOSS,  and as the disease progresses it is clear that you are experiencing some significant losses.  You may grieve the loss of the original relationship.  Roles are often reversed or at least revised.  Children and grandchildren take on the role of  parents.  Sometimes spouses, who were once on equal footing- slowly see a metamorphosis whereby one takes on a more protective and “in charge” role.  While the affected one, in the initial stages, may or may not readily accept the change in roles.  This loss of relationship as you know it is reason to grieve.  Yes, your loved on is still alive, but it’s not the same. 

I remember crying on Mother’s day and feeling horribly about it because my mother was still alive.  I’m ashamed to say it, but that’s not the mother I wanted.  I WANTED MY MOTHER.  Yes, I was grateful that she was still alive, but I wanted her alive in her fullness.  I wanted her to be able to laugh with me. I wanted to see that twinkle in her eye and hear one of those quick little quips. I wanted us to cook late into the night and talk later into the night.  So, for years, I grieved the loss of our relationship while she was alive. And honestly, I beat myself up a lot because I didn’t understand it.

Please, give yourself a break. If you can understand that grief is related to loss and not only death, then you can give yourself permission to grieve the losses that you are experiencing.  I would say this though.  Try to strike a balance.  Give yourself permission to grieve, which is normal.  At the same time, be grateful that you do still have your loved one, even if it’s not on your terms. 

How to grieve while your loved one still lives

  1. Take time to explore your feelings.  It’s okay to cry and be angry.
  2. Understand that what you are feeling is normal.
  3. Talk about what you are feeling with a trusted friend or counselor.  Consider keeping a journal.
  4. Know that your grief won’t end per se, it will however change faces as the illness progresses.  Give yourself time.
  5. Celebrate the positive and hold on to your good memories

Most of all be patient with yourself and know that even if your loved one can’t say thank you. Your gift of caregiving is appreciated.

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NOTE: The contents in this blog are for informational purposes only, and should not be construed as medical advice, diagnosis, treatment or a substitute for professional care. Always seek the advice of your physician or other qualified health professional before making changes to any existing treatment or program. Some of the information presented in this blog may already be out of date.