Father Recently Passed, Mother with moderate Alzheimers in my Care

GalVal · December 2023

Hello All,

My dear 92 year old father passed on 4 days ago. He and my mom have been married for 68 years. My 86 year old mom was diagnosed with mild Alzheimers approx. 3 years ago. In their later years, as my dad's physical body declined, and my mom's mental abilities declined, they formed a support for one another, with my dad being the brains, and my mom being the body.

Now that my father is gone, my mother's care is under my umbrella. We are taking it a day at a time to assess her best options moving forward.

The last 3 months have been very challenging with my dad quite ill, going back and forth between the hospital and rehab during that time. I believe that the stress of this has caused my mom to move into a more moderate stage of Alzheimers. She is having a lot of difficulty accepting that my dad has died. Meaning that she is delusional and is spinning fabricated stories, and constantly questioning me and other family members as to where he is, and if we've heard from him. Each time, we gently explain that papa has passed, and she seems to accept this for a time, but when the phone rings she thinks that he is calling her, and when it's someone else, she falls to pieces. It's only been 4 days since he passed, so my hope is that with time she may come to accept his passing and experience a bit more stability again. Has anyone else had an anything experience like this? If so, I appreciate any insights you may have.

Additionally, mom contracted covid in this last week, along with my dad, and me. Covid hastened his decline, although honestly, he already had a foot out the door. I feel that covid is also affecting her brain and the ability to cope with this change.

Thank you for reading this, and for any thoughts you may have.

Valerie

Anonymousjpl123 · December 2023

Hi Valerie,

I'm so sorry for your loss. It is actually not uncommon for one parent to pass, and the other parent with Alzheimers or dementia to become really disoriented. The same thing happened to me. I would say that taking it a day at a time is good. There are a few things you will need to take care of ASAP, such as Power of Attorney (if you don't have that already), finances, etc.

All of that said, since it has only been a few days, I would say that staying with your mom and comforting her is the best thing you can do. Since you are all recovering from Covid you may as well recover together. She will go through many stages, and the key is for you to let her know you are there and that she is safe.

After that, the hard work begins: does your mother have a primary care doctor/neurologist? Do you know what medications she's on? To be. honest, all of that stuff will need to be dealt with but again, it is still very soon.

Finally, do you live close by? I lost my dad to Covid and my mom's symptoms (now diagnosed as dementia and NPH) got much worse. It was about a year before we figured out a longer-term plan. You will be ok. It's a lot of loss. There's great advice here and you are definitely not alone.

Emily 123 · December 2023

Hello GalVal,

I'm so sorry for your loss. This must be so very hard for you and your family.

I found the following very helpful:

Understanding the Dementia Experience: https://www.smashwords.com/books/view/210580

Yes, a big life change and emotional upheaval will stress the person with the disease and exacerbate their confusion. Some of us on the boards have noticed that Covid also did this to our loved ones. It's been about three months and my mom is slowly bouncing back, but since her disease will progress it's hard to say what is due to covid and what is her disease progression.

Routine is the friend of a person who is losing their memory and their ability to process new information. The loss of your mom's routines will mean that she'll be challenged to handle her day to day activities. The disease leaves the person with limited bandwidth to handle change, so the loss of the support your father provided as well as the stresses of the last three months will really highlight how much backup your mom needs.

When you noted ''she is delusional and is spinning fabricated stories, and constantly questioning me and other family members as to where he is, and if we've heard from him.'' That's a result of the disease damaging the part of her brain that allows her to store memories--basically, her filing system is broken, and she physically can't retain information for more than a few moments. But because she can't remember that she can't remember, she'll be relying on what memories she still can access and cobble them together. Unfortunately, the disease will affect her sense of time and how she references those older memories too. Memories of things that happened to her (or to others in the family) become jumbled together, she can't differentiate between who they happened to or when they happened, and it will seem like she's fabricating a story rather than she's trying to make sense of what's going on using what memory she has.

This checklist below is for Alzheimer's. Your mom will pass through the stages, and you probably won't see her have every item in each stage. Alzheimer's is more gradual than abrupt, where the person may straddle stages for a while. They say the person will spend about the same amount of time in each stage. The support you put in place should anticipate what she needs on a 'bad' day, even if she doesn't need it often.

Tam Cummings assessment tools/AD checklist https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Because the news of your father's death is shocking to her, and she can't retain that information because of the disease, it will be easier on all of you to come up with a reason why your father isn't available that will soothe her. Maybe he's at a rehab, or 'out'. Don't continue to put yourselves through the emotional upheaval over and over--for both your sakes.

Part of managing her disease is keeping her calm rather than trying to make her understand that what she thinks is real (her stories), is wrong. It'll agitate her, and agitation can move her into a repetitive anxiety loop and she may get to a point (again, because of the dementia) where she can't manage the information or emotions she's experiencing and she will react, often emotionally. It's hard, at first, to not tell the truth to your parent, or not explain why what they're saying isn't right, but it gets easier with time.

Glad you're here, but sorry you're here...

CatsWithHandsAreTrouble · December 2023

Hi GalVal, warm hugs to you. So sorry to hear of your father's passing. The death of a loved one while also being a caregiver for a person with dementia is no doubt a unique situation that has a lot of challenges. I hope you have friends and family close by to help you adjust to both your new reality and that of your mom's.

I haven't experienced a loss of a parent yet, but I wanted to offer some suggestions for what to tell your mother about your father. As what Emily said, you will eventually have to tell her something other than he's gone. It'll be from a place of compassion to not repeatedly tell her it. She may not ever be able to understand he passed and to tell her everytime or trying to explain it to her would cause great grief to you both.

My mother gets very anxious when she can't see my dad after a lengthy time (he still works full time and is gone for about half the day). Usually I console her by saying he's out running an errand, that he'll be back soon; sometimes I say he's at work if she's more curious on his absence than stressed. I do not mention where he is specifically nor when exactly to expect him. She usually accepts these answers. Once in a while she doesn't and I'll acknowledge her uneasiness and try to distract her with something else she likes and redirect the conversation away from him.

I can only imagine the death of a spouse would be infinitely challenging to calm and console someone with dementia not only due to their inability to retain new information but also because you're experiencing the loss as well. I'm so glad you found the forum, there's so many wonderful people here who have gone through similar things and can help guide you through this new journey in life. I'm so sorry it had to be under such circumstances.