Guilt and Obligation

FrancieNolan · May 1

Hello all, I may just be venting with this post but I know there are many here who will hopefully understand.

My dad is 87, vascular dementia, living in AL for 2 months now. While it was hell first getting him to give up driving 6 months ago, then hiring a caregiver, then getting him to move, this was the best choice for him. The facility is excellent, nearby, with wonderful caregivers, activities and good food. He has settled in well and best of all I know he is safe. I worried daily when he was living alone and deteriorating.

But now I'm trying to balance my life and my obligations to my dad. I am the only person in our small family who lives here- my brother, half brother and his adult grandchildren are all in other states.

From a selfish standpoint I get nothing out of my relationship with my dad. We don't have conversations, it's just two people talking past each other. It's not just a matter of repeating things, he has completely lost the ability to have a conversation. Example: Me: "M (Granddaughter) started her new job! She really liked doing X and Y, seems like a good place for her." Dad: "Oh… good… you know I'm really worried about my phone, it doesn't work." (Latest fixation- the battery had died.)

Today I went over and he was sitting with another resident and they were looking at the local free paper. There was a write up about my son's high school baseball team and his picture was in the paper- I opened it to show my dad and he barely reacted. The other resident (who has Alzheimers) was more interested and had actual questions about my son and his team. And my dad used to LOVE hearing about his grandchildren, like most grandparents he would brag about their accomplishments. Now… there is barely a response. He doesn't ask a single question.

I literally force myself to go over there. I try to go once a week. No idea if that is enough or if he cares. He doesn't seem to. Other people sit with their family members and laugh and talk… I don't know what to even say or do because it's always the same thing over and over. "The food here is good, I like my room." I try to ask questions "What is the best meal you have had?" "What activities have you done?" But I don't get much in response.

The only time he calls me is if he needs something. Then I'll get 10 calls asking when I will be there with the toothpaste or whatever. At least he stopped the obsessive calling that he was doing when he first moved and he isn't asking to leave.

If anyone has tips on anything more I can do to make these visits easier and more beneficial for him please let me know. I'm going to keep going of course, just wish I didn't hate it so much. I usually cry when I leave because I don't have a father anymore even though he is still alive.

April23 · May 1

Ugh I am so sorry. What you’re experiencing is ambiguous loss, where you’re mourning the loss of your dad even though he’s still alive. It’s so painful but personally I think it’s normal and healthy to process those feelings.

I have a couple of ideas. I never visit my dad empty handed. I bring something, usually a favorite food or treat. I’ll bring a photo album, vacation pictures on my phone, his old stamp collection or baseball cards, something that gives the visit some structure. I found a cooking show on YouTube dad loved and for months we watched that every week.

Did he have a hobby, like fishing, golf, etc.? What did he do for a living, what interests did he have? Remember that long-term memories are more easily recollected than current events.

Is he religious, can you watch a church service or read from the bible? Music is great, old songs from his era, etc. I had a great visit once singing church hymns with my dad.

I would avoid questions (hard I know!). It may be that he can’t remember what he had for breakfast, so there will be no response. When he does say something, respond with a positive statement “Yeah dad the room looks great, I’m so happy you like it, I enjoyed fixing it up for you.”

You could also time your visits around meals or activities and attend with him. My dad loves when hubby and I eat with him. This way you have something planned to enjoy together. Even just sitting together outside with popsicles can be fun. It’s more about your presence than the activity.

Also remember that what works one day may not work the next. I know it’s hard to see them change before our eyes but it’s not personal. It’s just the nature of the disease.

harshedbuzz · May 1

@FrancieNolan

It's hard to manage ambiguous loss. I have a dear friend who cared for her mom in her home until the very end. She really struggled with this and once confided in me that "the little old lady who lives with me is nice, but she's not my mom".

It's important to remember that dementia means more than just memory loss— other losses include the loss of empathy and apathy around things that were formerly important to them. In many respects this change is as hard as the memories lost for those around them.

Instead of asking the sorts of open questions one might ask a quiet child afterschool as an ice breaker, maybe bring old photographs of him and maybe his parents/siblings as a prompt for him to talk. I found my dad wasn't much interested in others— especially more recent iterations of his grandchildren as adults— but he would talk about himself and his youth.

Another way to make visits more doable was to limit the time spent. PWD have little orientation to time, so a visit of 45 minutes might register as much as several hours does. I found it helpful to bring dad a treat whenever I came. A fast food lunch, something from the bakery and coffee or ice cream. It gave him something to do and often prompted him talking.

HB

terei · May 1

Try not to compare your dad’s behavior with other residents. It’s really not productive. Whatever his behaviors are, they are mostly not something he can control. I would bring a treat you know he likes and stay 10 minutes or so or take him to an activity. Unfortunately apathy is just a part of the disease. If he has a tendancy to make repeat calls to you, disable any function on the phone that allows him to press one button to make a call to you. If he cannot dial your number, he can wait to talk to you. I would call once every day or two…that’s it. Keep in touch with staff to get an objective idea of how he is faring. If he is engaging and doesn’t ask for you, I would limit visits to exactly when it is convenient for you. The guilt is real but you did not cause his disease and you cannot change its trajectory, as much as you would like to. Try not to worry about things that are out of your control.

FrancieNolan · May 1

Thank you all so much for these responses. They have all been helpful and have given me ideas for making visits more tolerable for me and productive for him. I'm going to try to bring things when I go and not go when he is sitting in his room and it is just the two of us. It was better when he was sitting in the common area and there were other staff members and residents around to add to the conversation. Lunches and dinners also good because there is something to do and a fixed time limit. When my son finishes school in a few weeks he can join us more often- the residents love to have a young person around.

And appreciate the reminder not to compare. I know that this condition is not just the heartwarming videos we see of sweet but forgetful old people. The personality change is what is most difficult to deal with.

sandwichone123 · May 3

Visiting once a week is reasonable, but limiting it to an hour is good. I would walk with my spouse around the grounds and listen to his thoughts. At first I would leave when he started complaining about the food. I told his cousin when she visited not to ask any questions. Instead of, "remember when we…?" she would say, "I was thinking about when we…" and it seemed to reduce stress on him.

I also rewarded myself with a rootbeer float or donut after I left. I think it's good to plan something enjoyable following each visit.

Guilt and Obligation

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