I decided to stop calling my relative

Iris L.

My relative with AD lives in her own home with 24/7 paid caregivers arranged by her adult children.  I had been calling her weekly, just to keep in touch.  She is my last remaining relative in my mother's age group.  She always asks when I am coming to see her.  I blamed my absence on Covid for a long time, but now I tell her it is because I no longer drive long distances on my own.  About seven years ago I drove seven hours to visit her.  That was before her diagnosis and she was able to host me.  Now, I don't think she really knows who I am, or realizes that I don’t live locally.  Today, when I told her I could not come to visit because it was too far for me to drive, she started crying and wailing "why? why?" and "please come, pleeease!"  I got off the phone, then called the caregiver back and told her that I was no longer going to call because she became too agitated.  

A while ago I had asked if she ever asked about me calling, so I don't think she will miss me if I don’t call.  I may call the caregivers and ask how she is, but not ask to speak with her.

Iris

Mint

Iris know this is sad for you.  Think it would be good to talk with her caregiver.  Still might feel like you’re having a little contact.

ZackFootInMouth

I want to cry a bit, but I also want to ask -- does the caregiver think that infrequent contact with you is going to be significantly beneficial for her? (Because you won't be able to make frequent visits.)

Michael Ellenbogen

My question to you Iris. If this was you in reverse how would you like to be treated?  Would the event out way the issues that came up just to hear someone talk to you?

Ed1937

I'm sorry Iris. Would she know your voice on the phone? If not, you might call her, and tell her you were someone else. That way you could have a little contact, and she might feel better knowing that someone cares.

sunnydove

Do you call her to make yourself feel good or do you call her to make HER feel good and because you love her? I think as long as she is able to answer the phone you should call even if just to say hi I love you and was thinking about you! If her memory is short enough you can just tell her you plan on coming next week or in a few days. Even if you can't make it, it will warm her heart that she has something to look forward to.

Iris L.

Thank you, everyone who responded.

Sayra,  no, I am not sad, I am pragmatic.  I know this is the course of the disease.

Zack, I will ask the caregivers how she is doing.  

Michael, I came to this decision because my cousin became agitated with crying.  She never cried with me before.  I know that after we spoke, the caregiver had to deal with her crying and being upset.  I don't want to be a trigger for crying and getting upset.  

Ed, I don't think she knows who I am.  In fact, I think she may think I am her sister, who died about ten years ago from AD.  It doesn't seem as though she recognizes my voice.

Sunnydale, my cousin does not answer the telephone, the caregiver gives her the phone and says, "this is your cousin."  As my last remaining relative in my mother's generation, I had been telephoning her every week for years.  Of course, we had good conversations in the beginning.  After the dementia kicked in, she could follow a conversation less and less.  Now, even talk about the weather does not elicit a response.  What I am trying to convey is that there is no conversation.  Her cries for me to visit are a version of "I want to go home!"  If she seemed to be content to hear my voice, I would continue to call.  But hearing my voice seems to make her cry now.  I don't want to trigger her crying.

Iris 

Ci2Ci

Iris L. wrote:

Michael, I came to this decision because my cousin became agitated with crying.  She never cried with me before.  I know that after we spoke, the caregiver had to deal with her crying and being upset.  I don't want to be a trigger for crying and getting upset.  

Showing my solidarity, Iris. YOU know better about the situation.   

I am now in a similar situation with LO who has just entered LTC-MC two (2) weeks ago ; she was in geripsych for 6 weeks prior to that. My LO wouldn't know who I am if the staff didn't tell her. But, when she then knows that, she starts with the "come and get me because..."  I am a trigger as someone she expects to do something -- to change her situation. 

When I am unable to do so, for whatever reason that I give, she gets irritated.  (She is completely disoriented to everything now. Last night, she asked me to come pick her up from the craft store!)  My biggest concern is that my LO escalates to aggitation, leading to disruption/destruction/danger, and gets kicked out of the MC facility. She is a very difficult placement; and this [crappy] nursing home is the only one that would accept her. She sat in geri-psyc all that time waiting for placement to this place. 

VKB

Irish L,  You are doing your best.  The disease is the pits.  I admire you for calling until you realized it was upsetting her.  It is good to keep in touch with those caring for her. I prayed for her and you.

Iris L.

UPDATE: My relative has been moved to a dedicated memory care facility, instead of 24/7 home care with private caregivers.  I spoke to her daughter about her crying, and she encouraged me to keep calling, saying her mom gets over her upset fairly quickly.  So I called her at the memory care place.  She seemed okay, not agitated or upset.  She cannot have a real conversation.  I asked if she liked the food and were the people nice, everything was "good" for her.  So I will continue to call as long as she doesn't get upset.

Iris

LaurenB

That sounds like a good outcome.

Suzzin

Iris, it might be time for a fiblet if your cousin asks again. You could just say "soon!" or "next week, hopefully", which sidesteps the distress of a firm no. My mom asks my brother that all the time, and he used to try to answer honestly---but even if he said "I'll be there in three weeks" she wasn't able to comprehend the time, or to remember he said it. So he just says soon, or next week, and she's happy to have an answer.

Iris L.

You know, Suzzin, I know all about the fiblets and I have used them, but I had become reluctant.  Earlier, I had told her it was too far for me to drive by myself, and she agreed.  But then she began to tell me to take the bus!  So she had some comprehension of travel alternatives.  I think she thinks I live in the same city and I could take the city bus, and she cried because I would not even get on a city bus to come see her.  Her daughter told me that she was thinking that I had told her that I was coming, then I changed my mind and wouldn't come.  That's why she was crying.  But I will think of some better fiblets for the future.  Thank you for reminding me.

Iris

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