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To Tell or Not to Tell: What to Do When a Surviving Spouse Has Dementia

16 Comments

Thank you. My mother just passed away Nov. 7, 2016 from lung cancer. She died at home surrounded by my father, sister, brother-in-law and me. I was her primary caregiver. My father has advanced Alzheimer's. They have a bond like no other and we're married for 53 years. My dad has regressed rapidly since that day. My sister and I are alternating nights to stay with him. The funeral was yesterday. We were afraid my dad would not make it. He has become very combative, agitated and unpredictable.

My sister and I discussed how to proceed with dad in order to get him dressed and ready for the ceremony as he has strongly resisted changing his clothes since the day she passed.

The night before the ceremony I took it upon myself to discuss the situation with my dad in an attempt to explain the importance of his participation on this sad day. My sister and I don't always agree on solutions which causes undue stress and tension that can be harmful for all involved. We are both alpha females. I'm the oldest. Her canned response to disagreements are "well, we will see" or "it's going to be fine". I'm not so trusting. I rely on action not hopes and promises. Let's not wait and see. Let's do it now. Why wait?

The night before the service was her night to stay with dad so I drove over to explain the plan for the following day. My sister kept telling me that I was wasting my time but "do whatever you want".

Dad had just finished his dinner. My brother-in-law, Kenny was sitting beside him. I entered the room and asked to speak to my dad. Kenny stood up and let me sit beside my dad. My sister came in to watch me waste my time. I took my dad's hand and told him that I needed to talk to him. Tears started to well up in my eyes but I was able to keep controlled. I explained that the following morning was mom's funeral. I looked into my dad's eyes and said that it is a very important day for mom. We need our dad to be with us to represent the family. It's important to mom that you are there for us. Then I began to explain the importance of wearing a suit and tie. He listened. He did not argue or dismiss me. I continued on with showing him the new clothes we have ready for him. His new slacks, dress shirt, coat and tie. I showed him each piece we picked out. I showed him the socks, underwear and shoes we had ready. He continued to listen. I was prepared to stop at any point that my words would become too much for him. I slowly continued by asking him if he had any questions or wanted to talk about anything? He said no. I was shaking and barely able to keep my words from cracking. I finished by explaining that he needs to take off the layers of clothing he had put on over the past week and a half. He had 4 polo shirts on and the same underwear, shorts and golf shoes (yes, golf shoes) that he adamantly refused to remove for so many days. I was preparing myself for the thought of his attending with all the dirty garb on or not attending at all. Suddenly he stood up and began to remove three of the four shirts. I was so happy I could no longer contain my tears. I looked over at my sister sitting in shock. Thank God I made a connection. He began to remove the fourth shirt and I stopped him and said "tomorrow". You take that one off tomorrow. We stopped asking him to put on his pajamas months ago. He typically sleeps in his daytime clothes and shoes.

My sister was accepting phone calls from her girls who were stuck at the airport trying to make it into town for the memorial services the following morning. I tried to get her attention away from her stress and focused back towards the huge accomplishment we had just achieved with dad. But she didn't catch on. I told my dad how happy I was, told Kenny to please do what he could to keep the stress away from my dad and left to cry happy tears all the way home.

But would he remember the following day? Was the connection real? Is it important to explain what's happening? Should you do it even if you are dying a little bit inside yourself? Yes, yes and yes.

The next morning I texted my sister for an update on dad. She responded with: He is doing great! Got right up and started getting dressed on his own...all done ...even put on clean undies.

Maybe my mom had something to do with it or maybe it was a combination of all of our efforts but dad looked sharp, attended his wife's funeral with dignity and pride. The services were as lovely as I prayed they would be, dad and all.

Our job as care takers of our loved ones is to protect them and bring them comfort/peace for how ever many days they are fortunate to live.

If you have been courageous enough to take on the responsibility of care for your loved one, then do what you feel is right for that person. There is no "One Size Fits All" solution. Help your loved one to find peace daily in whatever form that takes on.

Keep fighting the fight. You are a beautiful soul for walking your loved one through this incredibly trying time.

Since the Alzheimer's world is different from ours, using logic is generally counterproductive. What you are doing is excellent. She'll accept it and move on to something else without the unnecessary grief.
Keep up the good work - we know how difficult it is.
Carol

In the 6 months since my dad passed away, I've told my demented mother that he has died probably 30 times. She gets stressed and can't believe it. We have read the funeral notice numerous times. It agitates her. We have resigned to saying that he is doing some of the common activities he really did do in life. e.g. playing poker, having the oil changed or shopping at Wal-mart. She still asks very often, but she accepts our answer and is not agitated.

My Dad died Nov 1st. He had been in decline for a number of months. I had mentally prepared for it as well as I could. My brother and I braced to tell Mom about Dad dying. The first time was bad enough. My Mom's case is pretty bad - in the next 6 hours I had to tell her again about 15 times. My brother had been out running errands and neither of us were ready for this. It is 5 days since he died and the visitation is today. I'm sure she is going to ask about why we are at a funeral home and even ask why we are at a funeral service tomorrow and who is the person in the casket. I've come to the conclusion that we just continue with the support we have, but that the pain of losing a spouse causes even more pain than imaginable and I can't see my Mom lasting long under these circumstances.
Thanks for sharing, my Dad's case was not as bad, but my Mom's memory requires being told more than once a day, at least until we have the burial in another 3 days. The Alzheimer's Society has been a godsend and were would not have been able to cope with out their support. God bless you and keep up the great work.

Our family has been dealing with both our mom's Alzheimer's, and her sister's declining health for some time now. Her sister was 93, mom is now 91. They've both been living in mom's home, where my sister moved in w/two of her daughters in 2009.
Mom and her sister have had a very close relationship. But her sister (my aunt) was an extremely difficult, controlling individual with everyone. She never had any children, and unfortunately my mom had a strange way of allowing her sister throughout all of our lives to overstep boundaries. So the best way to describe her behavior, is that she was trying to hold me and my siblings hostage to her inheritance. I know this may be a side issue, but am curious also about my aunt's mental state of health at the time it was occurring. As one can only imagine, this has caused a lot of disention amongst two sisters, and two brothers. Of course there also are all of the gender issues in place too. Both mom and my aunt have never been shy about making certain demands of my sister and me, they would never ask of my brothers. My aunt did things such as having my sister as her POA, then getting in fights w/her about a year ago. Auntie called one of my brothers (who was second in line) w/respect to her legal matters and they went to her attorney to re-draft the will, and re-name that brother as POA. When this supposedly happened, my Aunt still remained in my mom's home, and was still cared for by all of the administration by my sister. This has been oh so draining, complicated by the fact that all of us we're well aware that the separation of the two sisters could be very devastating to mom, who is probably in about stage 4-5 of the Alzheimers. Last Oct., 2011 my Aunt was admitted to the hospital and released to Hospice. I am still at a loss as to who exactly decided to do the Hospice in mom's home. But for the next two and a half mos., we had Hospice nurses, our own caregivers ( who love my mom) caring for these two women. Mom's sister became increasingly difficult, trying to sabotage the caregivers. One took a temporary hiatus, because my aunt was threatening to call the police on her one weekend while on her shift. Throughout all of this, mom who used to sit w/sister in the living room to watch TV, now sat alone doing this. She as my sister described seemed to kind of detach from her sister while the Hospice was going on. My aunt, demanded that the caregivers get her out of the bed, quite against the advice of Hospice nurses, so that she could go join mom on the couch. BTW, she was on oxygen. Anyway, she finally passed away last week, we just had the funeral this week. My mom took it oh so hard, especially when the mortuary people showed up at mom's to take my aunt away. We took her to the services, and she had her very hard moments, then she seemed o.k. But now, it's two days later. I've been in touch w/my sister and asking about mom's overall mood. At first, I guess mom was exhausted and sleeping, which she's done a lot also I guess because of the meds she's on. But, this morning my sister called me to say, that last night mom was awake, and has a very blank look on her face, and isn't talking much at all. Because of all of my deceased's aunt's convalescence and general situation in our family home, mom hasn't been out of her home much. They used to go out in the past to eat out, but they were increasingly becoming immobile. But now, we are wondering how we can deal with my mom. Honestly we've been so engrossed in her sister's health problems for so long and sometimes I feel as if our poor mom has had to play second banana in all of this. But even though her sister was a difficult person way back, in the day when she was young, I was always suspicious that she too possibly had dementia. The sister was so aggressive and could still appeared to keep it mentally together such as recall and things like that.
But on the other hand given other behaviors, I'd mention and ask my sister whether she'd ever been diagnosed for dementia. Any insight on this would help.
I'm really trying to seek more information about all of this. I hope it wasn't too long, or I didn't get off topic. Myra

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.

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.

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?

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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.