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almostcrazync Asked April 2017

My mom has moderate dementia and continuously calls me to come over to her house. What can I do to keep from going insane?

I have no time to myself and work full-time. I dread seeing her number on the caller ID. I love both of my parents, but I have no time to myself. She will call early in the morning if she knows I am off from work to see if I am coming over. Even if I say no, she will call back continually until I finally give in and go over. I have no time to rest or socialize or even clean my house. 

BarbBrooklyn Apr 2017
Just so you know, this is a very common scenario.

Elder needs more care. Will not accept outside help. Adult child, often a senior themselves, works him/herself to death/exhaustion running to "save" parent. Child begs parent to move to AL, get aides, etc. Parent refuses.

Child either dies/becomes ill/refuses. Parent falls/has serious injury/illness. Is sent to Nursing Home.

This is NOT YOUR FAULT. You can't reason with dementia. You are waiting for an accident to happen; parent will be hospitalized and it will be determined that they can no longer live at home.

Sunnygirl1 Apr 2017
Amostcrazync,
I do feel for you. Both of them have dementia...that's a lot of responsibility. I can see why you feel you have to answer the phone. You know that something could happen and your parents call 911. As the adult child, we are keenly aware of seniors with dementia living alone. It's scary, because there are risk associated with it. Regardless, of whether a person claims they are okay, can function, etc., they are progressing to where they will not be. Except for the early stages, it is risky. Some people are in complete denial that anything is wrong, but, their care has to proceed regardless. It's tough. There are some threads around here about how some people deal with it.

I pulled up into my LO's driveway TWICE with ambulance and firetrucks in front. I knew then, she could not be left unattended. Once she called 911 because she was anxious and couldn't get her tv to work right. The other time a neighbor called 911 because she went on her porch and appeared to act odd. During this time, she would call me repeatedly to come and visit. I went everyday, but, it wasn't enough.

I'd re-evaluate if home is where they can have their needs met. Eventually, they will need around the clock care, regardless of what they might say. It's a safety thing and their mind may not allow them to accept help. Still, that's part of the illness and being resistant to care is common.

Are you the Durable POA and Healthcare POA? If so, I'd discuss it with their doctor and explore the options. Whether they can have around the clock care or move to a Memory Care unit or if they are private pay or will need to apply for Medicaid. Has that been worked out? I'd get things sorted before there is a crisis. With two dementia patients, that would be overwhelming. Things to check on is them leaving stove on, letting in strangers, eating spoiled food, injuring self.  Also, check their ability to use an Emergency Alert.  I know some seniors who fell and didn't use it.  They just couldn't remember how to use it. 

I hope you can find some things that work for you all. Please post about how things go.

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Sunnygirl1 Apr 2017
Dealing with behavior that is caused by dementia is so frustrating. I'd try to develop a strategy so you can function and actually look forward to speaking with and visiting your mom. I'd try to think of what is reasonable. With the dementia, the reasoning goes, so your mom may not be aware that you have to work and can't stay with her around the clock. You have to use your good judgment and accept that she may not be able to understand.

I'd first read a lot about the behaviors that come with dementia. That way, you can anticipate things that may develop as she progresses. My first question would be who is supervising your mom now during the day? I take it that she lives in her own home. Is your dad there as well? Does he see what's happening? Does he understand that he may need to stop it and if so, does he have the tools to help stop it?

At some point, the person with dementia needs supervising, because they are not able to process their time and activities. They also may become confused, scared, and anxious. That's why my LO called me so much. She would tell me that things looked strange, different and she felt that she was in a dream. So, I can see why they want loved ones near them. They need comfort and reassurance. Only, it may need to be continuance, all day with another person. Can she afford for that kind of service?

I might explore getting her help during the day who can redirect her attention to other things and not calling you so much. Also, what about Senior Day Centers? Some are set up for dementia patients. Also, some people let the call go to voice mail and then you call her back when you can.

I'd keep in mind that she likely has no memory of how many times she calls you. Each time, is like the first to her.

If she's overly anxious, I'd discuss medication with her doctor. That helped my LO and she wasn't so anxious, worried and scared, so she didn't need me around so much.

I'd keep in mind that this behavior often comes in stages and it may not last long. Eventually, the patient may lose interest in calling or lose the skills to use the phone and cannot call any longer.  It varies.

I hope you get some more suggestions and find some ideas that might help.

almostcrazync Apr 2017
Thank you for your advice. My mom and dad both live at home together. He is in the beginning stages of dementia also-the symptoms started a few months ago. They both go to a day center 3 days a week-and it has been a godsend. I have tried to get an aide to come and see them on the other days but they have chased every one of them away. The aide will offer to help- mom will tell her there is nothing for her to do-so the aide just sits and visits-then mom complains to the service that all the aide does is sit on the couch. lol I discussed this with their care team and we decided for at least the time being to discontinue the aides. They function "ok" at home it is not the best situation but at least they are home. My mother has always been clingy and possessive with me- hated all my friends, my husband etc., even resents my daughter at times if i happen to spend the day with my daughter instead of her. I feel so trapped..and I just need a break where i don't have to be on call and forced to go over there every day i am home whether i want to or not.
The center suggested that i join a dementia care support group-so here I am. It is a comfort to know that there are others going through similar situations that i am going through.

JessieBelle Apr 2017
Everyone's advice is so good. Another thing that may make you feel guilty, but will save your sanity is giving yourself permission not to answer the phone. You most likely know your mother is safe and that she wants to ask you to come over. Is your father there? If so, you know she is okay. Decide how often and when you will answer the phone calls. She may leave messages, but that is okay.

97yroldmom Apr 2017
You have to set boundaries. It's hard but eventually it helps. Give her a heads up. Tell her you need to focus on yourself a bit and you need her support. Tell her when you will come by and stick to it. Tell her to call 911 if she has an emergency. She may be lonely. Offer suggestions on what she can do or who else she can call. Maybe a fresh phone book or a list of old friends and family with their phone numbers listed for her easy access would help. See that she gets out occasionally. She may be suffering from anxiety. If she needs help with items at home, look for an aid and discuss with mom how much it would cost her. She will become more needy as time goes by so it's important to recognize and address this issue now. Many patents feel that your free time is their time and at first we don't notice but it adds up if we don't set some boundaries.

almostcrazync Apr 2017
Many have told me not to answer the phone and I think I may have to do that. I just worry what if I don't answer and it is an emergency? But you are right they both have the medic alert necklaces and paces number to call so maybe that is the solution in and of itself...

lkdrymom Apr 2017
If it is a true emergency what are YOU going to do about it? Think about it...if one of them was having a heart attack should they call you or 911 first? I had the same issue with my father. Would call and want me to come over for some 'emergency'. Even expect me to leave work. And I'd find out the emergency was him needing his remote reprogrammed. I learned to not return his phone calls immediately and if he insisted I come right over I would not be available for at least 2 days. Every single time the 'emergency' worked itself out on its own.

almostcrazync Apr 2017
@Sunnygirl- thankfully last year we got them involved with the area senior care center which does home visits and assessments- they had their most recent one 2 days ago. Right now thanks to pace they are in adult day care 3 days a week,the medical alert company they have does regular checks to make sure the buttons are working properly and that they know how to use them. They have both named me as their health care poa in the event they cannot make their own decisions. I think the bases are covered so far in that respect but I appreciate all the suggestions and advice and if you think of anything else please let me know. I just feel so overwhelmed sometimes that I need to know others opinion to weigh in and make sure i am making the best possible decisions for my parents. I love them both very dearly-but I am an only child and there are no siblings to discuss their care with it is just me and I am so glad that i joined this site-the support has been remarkable.
BarbBrooklyn- this is my big worry - what if something happens to me- who will take care of them. I am exhausted-but not ready to give in just yet..But i am at the point where "somethings gotta give" and soon. Many of the suggestions i have been given so far have been extremely helpful and I welcome any insights as I am traveling this road alone- and done want to make errors.
lkdrymom- you are exactly right- did your father "throw tantrums" too? My dad will decide he wants something or wants something done and when he wants it done it will be immediately or if it is an item from the store he will threaten to take his hoverround across the busy street to the local grocery store. If it is something he wants done he will attempt to do it himself whether physically able or not. I am starting to try the delaying going over if they bug me tactic but i dont know how well it will work. Thank you for sharing about your dad it is very similar to what i am going through...

Harpcat Apr 2017
Reading this I can so relate. My dad has lived here in my city now for 4 years. First in IL and now in AL. he too will call me in the evening mostly and it is only to complain about something not working right or someone is stealing something etc. he never calls just to say hello of course. I've had a very rough year with him recently having an appendectomy at 95! So the anesthesia has messed him up a bit too. Anyway, as the only one of 4 daughters living here, I began to be exhausted mentally and physically and felt resentful. I decided I could no longer answer my phone after 5:30 at night. It's never an emergency and I need to claim that time as mine and my husbands. Luckily for me he is in AL where emergencies can be dealt with. But it boils down to deciding how important your mental health and well being are. You might also consider a shirt term bout with a therapist, which I just recently did. As an only child you do shoulder a large burden. I often feel like an only child because I'm the only one living near him. Please set boundaries as others have mentioned. It is not your duty or burden to go through life like that or you will get ill.

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