Stress and Guilt for how I feel about taking care of Dad

AZRose55 · July 31

I wake up with panic attacks, if I sleep a full night at all. The stress from my situation is affecting my health. It has taken over my life for over two years now. Let me explain.

My parents married as teenagers. They were married long enough to have me and my sister. Then they divorced and remarried. My Dad married a wonderful woman, and had five more children, whom I love very much, even though we did not grow up together. I am currently 71. Being the eldest had the expectation of caring for others. Being responsible if anything bad happened. My sister and I rarely saw my Dad in our younger years. He worked long days and we often saw him for maybe two weeks a year. I know that Dad loved us, but he never called, rarely paid child support, and we were never as close as kids could be. We never felt that he would rescue us from a very dysfunctional life. Our mother was likely bipolar. She was verbally and physically abusive, but we knew if we told Dad, he would not save us. So we kept silent.

Now Dad is 89 and has been diagnosed with Alzheimer's. His wife/partner has left him, and his seven kids are doing what they can to care for him. His memory is so bad that he calls me ten times a day and cries and begs to come home. They are always the same conversation. He does not remember speaking with me earlier.

Though Dad is out of state being cared by one of my half-sisters, my health from stress and anxiety is getting worse. I take medication, but it is not helping as much as it should. I'm the eldest, I should be able to handle all this. I'm afraid that the conditioning to take control of my responsibility is actually doing me more harm than good. My therapist pointed out that I need to remember how neglectful he was….I can't wrap my head around that.

SusanB-dil · July 31

Hello and welcome -

As the oldest, that doesn't mean you 'should be able to take all of this on your shoulders'. Nor should you. It sounds like you are reverting back to taking care of everyone. Please allow the others to do the most of all of that and the heavywork. Pitch in only when maybe it is truly necessary.

Do try to cut down on answering the phone each and every time. That really isn't helping either of you. Maybe choose a time that is most convenient for you to go ahead and answer or call him back. For the most part, since he doesn't remember calling you in the first place, it will only serve to get you more frustrated, and again, the calls wouldn't help him in any case. Your half-siblings should probably make sure he isn't speaking to scammers. A lot of us would even disappear the phone at this point, or utilize a phone where it is restricted on calls going in or out.

He most likely has anosognosia. This is not denial, but rather, the total inability to see that there is anything wrong.

H1235 · July 31

Welcome. I think even those of us fortunate enough to have loving caring parents shouldn’t be expected to take 10 calls a day for a parent cared for and in a safe environment. I would block his calls. Figure out how often you feel comfortable talking with him (there is no right answer here) and you call him when you feel ready. If he is angry or nasty when you call because you didn’t answer, apologize and tell him you have been busy. If that doesn’t work, call less often. If you are on good terms with your step siblings, they will call if there is a problem you need to worry about. I talk with mom every other day and visit once a week. I am also the oldest with one useless sibling. I am responsible for everything, but mom is in a nursing home. If your half siblings are managing his care let them and give yourself a break. It’s ok to step back. If he is out of state and well cared for, it’s time to set some boundaries! Find something fun to do to get your mind off this. So sorry you are going through this.

towhee · July 31

Welcome to the forum.

Dealing with the emotional toll of Alzheimer's caregiving is difficult and sometimes therapists do not quite understand. We are grieving the loss of a relationship and the loss of any future healing of that relationship while the person is still alive. That is one thing. Another is that since there is no long term meaningful medical treatment, as caregivers we put so much more emotional commitment into care.

It helps to have some information about common problems and some strategies to deal with them and to remember that you cannot take care of someone else if you do not take care of yourself first.

When you hear "I want to go home" please realize that it does not just mean a place, it means a time, a time when they were the person they used to be and all was well with their world. In the middle or late stages of the disease they would not even recognize where they used to live. You can not turn back time, you cannot fix this. You can grieve but there is no reason for guilt. What you can do is come up with some strategies for responding that lessen the anxiety or other emotional reason for the call. The dementia careblazers channel on YouTube might have some suggestions. Teepa Snow might also be helpful, but she is harder to search and find concise advice.

The problem of constant phone calls comes up fairly often, usually in connection with placement in a facility. The usual advice is to block the calls or have them go to voicemail except for certain times of the day, or to block access to the phone. Sometimes the anxiety level drops when there is no access to the phone. I would talk to your sister. Is there a particular time of day when having someone talk to him would be helpful to her? You might gently ask if there is something else you can do to help. Does she need a respite caregiver, adult day care, medication for him, or is it getting to much for her and she needs to place him? Ask carefully.

AZRose55 · August 1

Thank you all for your support. Much of what you say is very applicable to my situation. I have blocked his calls, though even reading the voicemail messages he leaves are painful. It's mostly angry, frustrated calls begging me to fix his situation. I have to stop reading them after a while. We are looking into a cell phone that can block or limit his outgoing calls. I'm going to talk to my sister about losing his phone occasionally…if it doesn't cause him too much anxiety.

Thanks for your suggestions and support. It feels good to know that people hear me and can relate.

sandwichone123 · August 1

When my dh was calling me a dozen times a day I removed the phone. I thought he would miss it, but he really didn't. He was calling when I could tell he was around people, at a meal or activity, but it seemed to be an autopilot-type of thing.

AZRose55 · August 2

We have considered that, but then researched the effects of losing that to a highly emotional man. He really is attached to that thing, and it may cause more anxiety without it. He has become so unpredictable in his moods. It could cause more harm that good.

Emily 123 · August 2

Much of what's driving his behaviors here seems to be his state of mind. Perhaps his baseline level of anxiety is elvated. You may want to discuss with the primary caregiver if asking for his meds to be adjusted might help his peace of mind. It can't be comfortable for him to be in this ramped up emotional state.

In the mid-stages the person can no longer hold more than a single train of thought for very long. This is why even simple chores that they used to do easily become difficult. In these stages, visual cues will often trigger a behavior. For instance, seeing a paper copy of a bill will send the person down a rabbit-hole of trying to check on their finances, or pay bills multiple times. A phone can provide the same visual trigger. The person will call whoever they can to talk about their unhappiness, but it's an unhappiness driven by the disease , which removes their autonomy & their ability to adapt. You're making good progress in handling the response to the calls, but I agree with others that it might be time to see if removing the phone helps.

There are two things to keep in mind about triggers and Alzheimer's in general:

Out of sight can = out of mind. Removing a trigger from the line of sight can help.
A person with dementia can't recall that they're telling you multiple times a day about the same thing. Your dad has a phone, he calls you to vent. He forgets the call. Wash, rinse, repeat. You remember each call, and they stack up to increase your anxiety levels—you can't help but equate the amount of calls to dad's level of discontent and feel guilty. But…the calls are a reflection of how disordered the disease has made your dad's mind and not a reflection on your care. 🙂

Stress and Guilt for how I feel about taking care of Dad

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