How Alzheimer’s Patients Grieve



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.

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Comments

  1. Sue, I’m not sure that there is a pat answer because it depends on what stage the patient is in and what’s going on at the time. I would say that caregivers must assume that the patient is grieving (regardless of the response) and should be treated as such. Patient should be allowed to attend the funeral, if possible. Maybe being a part of the process will help the patient to understand at least in part. Please note: family member should have an additional caregiver present to help with alzheimer’s patient specifically during funeral/memorial service. If the patient is still “with it,” then you can probably start with the typical grief recovery stuff, but if not, then getting cues from the patient may be the best thing to do. In most cases, the patient just won’t understand, but will grieve deeply, maybe even more deeply because of that lack of understanding. Comfort, comfort, comfort and look for signs that something is awry, maybe a change in eating or sleeping patterns, emotional outbursts, crying. Of course, these are all symptoms of Alzheimer’s disease, so it will require a keen eye. Finally, the patient may start to wander to look for his/her “missing person.” I’d say, provide some safe paremeters and let the patient go. It’s unnerving, but its what the patient “needs” to do. Blessings back at you as you do this amazing work. One last thing, lack of memory helps in this situation. Grief will probably be deep and acute, but maybe not very long, depending on the progression of the disease of the patient. Sue, thanks for stopping by–Loretta

    • hi. We lost our mother about one month ago unexpectably. my father has Alziemers and now is in the grieving process. I am his caregiver and I dont know how to help him. Mom and Dad were married for almost 60 years and hardly ever apart. he is filling up the car with all his clothes. im letting him cause I dont know what else to do.is there any advise you could give me to help with this. Im afraid we are going to lose him also.

  2. Susan Church says:

    Hi Loretta – Thanks for your article about how Alzheimer’s patients grieve. I am looking specifically for information about how to deal with the death of an Alzheimer’s patient’s loved one. In my work both with hopsice and as a pastor, I am more frequently encountering death where the remaining spouse, or parent has Alzheimer’s disease. Family members are looking for information about how to death with that death with the patient. Any information you can provide will be most welcome. Blessings! Sue

  3. Hey Mary, thanks so much for checking in! You are so right about us trying to make people with dementia remember things. I think its because its so painful for us, but I LOVE your advice and will share it. We have to love and accept you for who you are NOW versus for who we want you to be. I know I went kicking and screaming into my mom’s world. Sometimes, I’d just look at her and wonder what it must be like in her world. So, tell me, what can people (family and friends) do for a person who has been diagnosed with dementia? Thanks again for stopping by. Loretta

  4. Thank you for that Loretta…and I love your website. I wanted to add something here. I think the most frustrating thing for us diagnosed with dementia, is everyone trying make us remember things…..trying to bring us back to what we were like before. I think it would less frustrating if our family would just come into our world….and accept and love us as we are now.
    Hugs
    Mary

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