Why Should a Caregiver Tell Their Parent the Truth?

Thanks for sharing your story ... both my parents have passed but my husband and I are caregiving (out of the home) his mother. She is in the early stages of dementia but more than not is still pretty much dealing with reality. Her husband died almost 3 yrs ago and she has not completely recovered - and I realize that it is unlikely that she will ever be the same. She has bright days and darker days.

I cried when I read the story of your father ... and mother. This business of losing loved ones gets pretty hard at times.

I just "accidently" found this site/blog and am already glad to see that I share with so many in their daily struggles and questions. I'm an only child and have recently begun helping my father (89) who was suddenly diagnosed with CHF in Dec.

A few years ago my sister was dying and in a nursing home. Her room mate was a sweet lady in her 90's with early demetia. After my sister died I went back to visit her. She asked me how my sister was doing and I told her she had just died. Helen started crying hysterically and it took at least a half hour to calm her. A few minutes later she asked me again and I told her my sister had died. It was like she was hearing it for the first time again. After I calmed her down she asked about her again, and I told her she had died along time ago. With that she said she was sorry to hear it, but know that she was in heaven. I found out that telling her it was awhile ago made it easier for Helen to deal with my sister's death. I don't know if this helps, but it helped Helen to accept my sister's passing.
My grief was still fresh, I felt I had to tell her my sister died to give closure, but telling her it was along while ago worked in this situation.

Hi Marie,
Yes, I think you are onto something. Once they are told, there are often different ways we have to handle this, depending on the day. But making it sound like "a long time ago" can help. The whole subject becomes a moving target and we have to go with our gut. You've got great instincts.
Take care,
Carol

If a parent is in the beginning stages of dementia does one tell them they have dementia?

My 85 year old mother has alzheimer's and is living with me. She used to talk to my aunt, her younger sister 2 x a week but in the last few mos the dementia has worsened. It is difficult to carry on a conversation with mom now and she is confused most of the time. Her younger sister just died suddenly. Mom hasnt spokern to her in months. I spoke to the doc and we opted not to tell her. I think it would terribly set her back farther and she would forert anyway. What do you all think?

My story is similar but in this case it is telling a parent with severe dementia that his only child has passed away. My grand-father’s dementia had him all over the day with regards to what he perceived as reality. He clearly didn’t remember members of his own family; living in the house were he, my grand-mother and mother. In the Fall of 2008, my mom was diagnosed with Pancreatic Cancer and after a really hard fight against this awful disease she was put on home hospice in mid-February 2008 and passed away within a matter of a few days later at the age of 62. Within the few hours that passed as the hospice caretaker returned to the house and we awaited someone from the funeral home to arrive, we were all seated in the room with my mom’s body and my grand-father was totally oblivious to what was going on; he was rambling on about this and that, laughing and joking as usual. He was unaffected by the somber mood that everyone else was in and complete unaware that his only daughter had passed away and was lying in the bed within 4 ft of where he was sitting. He did not attend the funeral, a family friend stayed with him while we attended services and repast. A few months later, he had what I refer to as a “moment of clarity” and out of the blue asked my grand-mother “Where is Joan?”. My grand-mother didn’t really know what to say so she tried explaining the best was she could and at some point he understood and said “Are you telling me that Joan is dead?”. My grandmother told him “Yes” and explained that she had fought a hard battle against a nasty disease and was no longer in pain or suffering. My grandmother said my grand-father cried his eyes out for a short while, she gave him some water to help calm him and when he had calmed down the “moment” was gone he was back in his own world again. I am actually thankful for that “moment” as my grandmother had a chance to see a glimpse of the loving, gentle and sensitive man she had married 50+ years prior. I am thankful that he remembered his only child/daughter and had the chance to mourn her even if only for a moment.

My mother asked over and over again where her husband Bernie was. Even though she attended his funeral, she just couldn't process that information. i believe it was because she didn't want it to be true and so it wasn't true.

I never really resolved in my own mind what was more cruel-seeing her mourn his death over and over as if it were the first time she heard about it or was it more cruel to let her think that he was alive and had left her? There was just no winning this.

For a while I told her that he was dead and watched her cry. Then I just started changing the conversation to avoid having to go through it. After several years of this, she stopped asking about him.

I don't necessarily agree that it is best to keep wounding your parent with news of their spouses death over and over. I believe that that information will eventually be assimilated when your parent is read to accept it. Perhaps they will never be ready. I think it is more important to remember the good times and to focus on that instead of the death of their loved one. I have a post on my blog about this.

Lying to a parent with dementia is sometimes necessary. What do you think?

Dear despr8, Good comment for me. I totally agree with you. Thanks for the comment. I really felt it would set mom back if I told her ab her sister. I don't think she would remember and possibly remember off and on and be sadder then she is at times. There are things that go on within the family that I dont tell her. It would add more worry. I just want her to be happy and comfortable.

I am one for being truthful with people. However, I would weigh the Pros and Cons at this stage. If she's not having an issue with it, I don't see why you have to tell her. On the other hand,
you don't know how quickly this AD will progress. My MIL went from stage 3 or 4 to stage 7 in less than a yr. Her mother had AD, when it wasn't called that and for her to progress to stage 7, it took her at least 5 yrs. So you really never know how fast it will go from stage to stage. If I'm not mistaken, there are 7 stages, maybe 8, but I think 7, that they go thru. My DPOA SIL gave me the title of a book--"The 36 Hour Day" by Nancy L. Mace, MA & Peter V. Rabins, MD, MPH. You may want to make appts. with her and get legal matters taken care of while she can still think for herself. Ask her things like, "How do you want me to handle it if you have to go into the hospital and on machines? Or do you want a 'DNR-Do Not Resuscitate' Order".
My MIL has a DNR with Comfort Care in place if she ever has to go to the hospital. If you don't already have this typed up or printed out and sticking to the refrigerator--you should do this:
Patient Information/Name, DOB, Her Primary Care Physician's Name, Address and Phone No. including Fax No. and what group he/she is in.

Patient Care History (Underlined)

ALLERGIES: What allergies she has, COMPLETE MEDICATION LIST: List them all and what they are taken for (even if they are taken occasionally--e.g. Tylenol 250 mg. Tabs/Caps Two (2) by mouth (PO) every (q) 4-6 Hours As Needed (PRN) .), Medical Condition (Underlined)--e.g. Alzheimer's Disease (AD), Surgery (Underlined) Whatever surgery(ies) she has had and when. I include any other doctor's names, phone #s, and addresses. If there's room I list what tests I have to go for and how often--e.g. Lipid Panel (Cholesterol, etc.) MUST FAST FOR 12 HRS. (annual or bi-annual). I had it in case she went to a new Dr. or the hospital.
Whatever you decide, Good Luck! ...and feel free to come back to this site when you have a question or you feel frustrated--it's good for info as well as venting.