Alzheimer Disease: "It's Okay, Mama, If You Want to Go, It's Okay"

Palliative care services for people with dementia: A synthesis of the literature reporting the views and experiences of professionals and family carers

“…Other accounts from friends and family close to the person with dementia make the point that they feel that they alone know the person with dementia’s wishes:The Professor had expressed wishes that he would not like the idea of a nursing home, I promised him that I would take care of him at home. (McFarland, 2010; family carer)Markowitz and Rabow (2002) interviewed Ms P, the daughter of a woman with Alzheimer’s disease. Ms P said that family carers of a person with dementia should think about what the person would want without being selfish or ‘focusing on what we want, but rather on what she would have wanted for herself.’ She suggested that options and preferences should be discussed with the person and their carers while the person with dementia is able:You don't have some of the heartaches that my family went through before we finally decided to place my mom into the hospice program.…”

“…The account later portrays the decline of Johnny in hospital, the medical complications that arose in hospital and the negative care experience of the person and their family. One of the difficulties highlighted is poor communication with senior staff members:It was … difficult to know when and how often he (the doctor) was in touch with the ward and how long it took for his orders to filter down … the cast of characters often changed.In contrast, Markowitz and Rabow (2002) interviewed a daughter who spoke of her mother’s positive move to hospice care:Surroundings were very soothing and calming. I still remember it as being something pleasant, rather than her being in a hospital, dying there, and being real sick.Both good and bad experiences are reported in the papers reviewed.…”

“…What was left was our suffering and how to deal with it.At the same time, this was the most rewarding thing that I have ever done; his appreciation was conveyed by his last words to me, ‘I do not know what I did to deserve you.' It gave me peace of mind to know that I did the best I could for him and that even in his decline he appreciated what I, together with friends and family, had done for him.In Markowitz and Rabow’s (2002) interview, Ms P suggested that grieving starts early, well before death:Our mother was sick for 5 to 6 years, and we had lost her back then, actually, so we grieved for 5 or 6 years, but I truly believe that this was a blessing, that God gave it to us this way so that it wouldn't be as hard on us.Grief started before death in Lella’s (2000) account:The decision to let go, to do nothing, to let nature take its course, is not easy among people like us who celebrate doing, activity, competition … even when the road was obviously coming to an end, it was still difficult to abandon it.…”

“…(McFarland, 2010; family carer) Markowitz and Rabow (2002) You don't have some of the heartaches that my family went through before we finally decided to place my mom into the hospice program. I'm so sad that we didn't have the conversation about life and death and funeral arrangements, just to prepare.…”

Adaptive Care Planning: A paradigm shift

“…Trajectories of different medical conditions and decision points for medical care discussions. In the classic trajectories, 14,15 with terminal cancer the change in function is abrupt and catastrophic, and the main decision points occur at the time of diagnosis and when the patient "takes to bed." Thus, advance care planning may be best conceptualized with the traditional simplistic terminal cancer trajectory in mind: the patient decides what kind of medical care they wish to receive when they reach the point of "taking to bed" and this decision then guides all subsequent care.…”