Follow
Share

My dad is in a memory care home. The stress caused him to decline substantially in the last couple of months. He has both Alzheimers and vascular dementia and the doctor thinks he is having "micro-strokes" (there is a medical term for this that I don't remember) that is causing this "step-wise" decline.


He used to be confused with horrible short-term memory, but otherwise okay. Now he is obsessed with certain topics. One of them is that my mom is cheating on him. He angrily accuses her of this (they don't have any contact), non-stop, calling me over and over again every day. I am usually able to redirect him to something else but it is extremely stressful to me. His anxiety about everything is often high and I am the only one who can soothe him. This makes me feel tremendous pressure and I feel my own anxiety ramping up every time I see his number appear on my call display.


I just don't know how I'm going to handle it anymore.

I am sorry for what is happening with your father. This unfortunately happens to so many older people and it is killing and devastating the families and then they get guilty, and angry, frustrated, upset, etc. There is absolutely NOTHING you can do to stop them because just being in their presence when their behavior stinks will eventually destroy you and I don't think anyone deserves that. If you go to visit him and he starts acting up, find an excuse to leave at once (like going to the bathroom) and LEAVE. If you stay and try to make him peaceful, while you are soothing him, I assure you the day will come where you will "fall off the planet" - do NOT let that happen to you. LEAVE AT ONCE. You can no longer help him. He'll calm down and won't remember a thing. TAKE CARE OF YOURSELF AND PUT YOU FIRST - IT IS YOUR TIME TO LIVE LIFE NOW.
Helpful Answer (2)
Reply to Riley2166
Report

This type of looping ..."I want to go home. No one is doing anything here to me. They are not even giving me medicines and, the doctor has not come to see me." - is for me the hardest one to deal with, as it has been easy getting caught in a reactive and guilty cycle as the POA who placed her in the assisted living home.

In answer to shb1964 - How do I respond or do I respond?
I DO respond, time and time again, different ways. I respond because I understand that although Mom will not remember anything in a few seconds, she does have an inner struggle of some type which she cannot resolve, so I try to soften her state. Here are some of my answers. [And yes, once a month I allow myself to cry because I feel cruel not bringing her to her home.]

- "Mom, you are not in a hospital. You are in a nursing home." This sometimes relaxes her as one of her delusions is that she has been in a hospital and no one is doing anything for her.

- But when this reply doesn't work, when she then responds, "I know I am in a nursing home but I still want to come home. I am taking a taxi today." Then I continue: "Yes Mom, I understand that you want to go home. Let's talk about this when I visit you tomorrow." When I say that, she feels heard and at peace that her need will be resolved tomorrow. In a moment, she has forgotten that she wants to come home.

- In two moments :-) she calls back wanting to come home as she has forgotten what I told her, I may pick up the phone or not...mostly not. It hurts like hell inside but it is my survival red-light taking over here. Next time, on the script, is reminding her: "Mom, for many years, you told me that the day when I was no longer capable medically to take care of you, that I should find a good nursing home for you. Well, this is the best nursing home in all this area and you have lots of people here that know you and love you." This assures her that all is under her control; this is a good strategy as there is little they feel they can now control.

- If this does not work, then I offer her the last card I have. I take her hand if I am with her and tell her I love her. On the phone I tell her that I am not far and can be with her instantly at any time she needs me. This makes her feel secure and that she is not alone. I follow with connecting with her feelings and an old sense of what is for her the right way of being: "Mom, the last 6 months that you were at home, I had to care for you, could not work and could not sleep or go out with my husband. I got sick (this is true). So, I had to care for my health. I want the very best for you. So, I got you this wonderful place to care for you. In that way, we are both healthy. I love you so much." To this, the part that was a good wife understands and at times she replies: "That is the best decision you made. You have to take care of your husband. He comes first."

Mom is still looping and this is her state. I am trying not to loop with her as that hurts her more. If she senses in my voice that I feel bad, then she latches on to that and uses it to manipulate my emotions. Mom's seem to be very good at this and we fall for it!

My hardest lesson has been to separate my old feelings of cultural obligation, family responsibility and personal (unfounded) guilt, from the ability to soothe her. Otherwise, we both loose.

This is not easy. It sucks to be in this situation. But, I am using it as a spring to my inner growth in witnessing what still gets me off my center (making lemonade, as they say); and at the same time, be a better support to Mom who in various moments may be experiencing a difficult inner life at no fault of her own.

I once heard that if you want to be enlighted in this life, become a swami. If you want to do it faster get married, and even faster than that, have children. Well, I feel that being a caregiver to dementia gets a LOT more 'heaven credits' and has quicker self and life-learnings than anything else I have encountered.
With love!
Helpful Answer (6)
Reply to balancedCaring
Report
shb1964 Mar 16, 2019
I needed this. I'll share with my sister. Thank you. And "with love" to you, too!
(0)
Report
Elders or anyone for that matter who are taking some medications develop a mental disturbance as the medication has manifested itself into hallucinogenic thoughts. In this case, his illness is under the broad umbrella of mental imbalance called "Jealous Subtype." It's a real thinking process that no matter what is said to them, the person will still believe that their spouse is cheating. In fact, they may even hear voices. Get a med check for him.
Helpful Answer (1)
Reply to Llamalover47
Report

A medication review with the doctor is always in order when they exhibit a change in personality or behavior. Sometimes the solution can be quite simple. My dad developed extreme irritability from the changes taking place in his brain and made everyone's lives miserable with his complaining and yelling. His doctor put him on Lamotrigine (Lamictal) for it's mood stabilizing effect and he became the darling of the caregivers! Unfortunately, it's usually not a one and done situation so you can expect to have to revise the medications around the emerging symptoms. Fortunately, there are things for anxiety, agitation, insomnia, delusions, etc. I witnessed miracles in my dad's care setting with other individuals as well. Assign the doctors the hard work and see what they can accomplish. Best of luck!
Helpful Answer (3)
Reply to Portmarly
Report

Hi AlwaysExhausted,
First, don't feel alone. When I first began communicating in this blog, my blog name was "caregivertired7", so I totally understand that feeling.

After 5 years of her living with us, both my husband and I got quite sick as Mom (almost 98!) also has ALZ and vascular dementia. Hard to do this care! I had to make a few decisions which were for me very hard: 1. I had to allow her to go through her stuff without me always being her support, and 2. (for the sake of our own health and marriage) I had to place her in an assisted care facility long-term.

At this point, I changed the resonance of my blog name from "caregivertired7" to balancedCaring, as I felt I was doing a disservice to myself energetically with that negative title.

So, once she was in long-term care, I had to deal with a different type of stress - Yes, at that time began the 10 to 41 calls per day. OMG! BUT, I felt relaxed about her having good care and us being able to at least sleep and work (we are self employed at ages 67 and 70). I would listen to her VM right away, as she does not know how to call the nurse (right next to her!)...she calls me and says she doesn't feel good then I call the nurses.

Mom loops with 3 things:
- "I want to go home. No one is doing anything here to me. They are not even giving me medicines, and the doctor has not come to see me." (Note: she thinks she is in the hospital after only a few days...she has been there 2 years now)
- "Are you okay with money? You don't tell me the truth. I know you to lie to me about money." (Note: all is well in that regard with us)
- "Someone has robbed me! My wallet is gone and all the credit cards and money in it!" (Note: this goes on a few times each week.)

After I realized that she was having a hard time emotionally handling the high anxiety/confusion that these illness bring to the person, I took her to the psychiatrist and they placed her on a low dose of Celexa as liquid, anti-anxiety med. - a med non-harmful for her issues and one which keeps her great personality and joy intact.

The best decision I made!
Mom has been on it now for 5 months. She is much calmer. The repetition is still there, but the level of anxiety is not there. Better for her. At least she is enjoying moments of peace.

Unfortunately, these illnesses do not get better, but worse. You WILL handle it if you remember to pace yourself each day (like running a Marathon), rather than try to run a real fast race each time you hear the gun go off.

This is a great vehicle for all of us to know that we are not the only ones to have to deal with this. It is definitely hard and cruel for the person and for the caregivers, yet, I am trying to learn to be present for her in a non-reactive way so that I can be a point of balance for myself, my clients and Mom too.

I hear your heart.

With love,
balancedCaring
PS: Apologies that I went on for so long!
Helpful Answer (5)
Reply to balancedCaring
Report
shb1964 Mar 15, 2019
Question for you on the looping thing... #1 on your list sounds like you've been visiting MY mother!! How do you answer her - or do you answer her? Some things I'm learning to deflect, but not that one. Yeah, yeah, we're not supposed to argue or correct, but they ARE doing things for her, they ARE giving her meds (when she will take them), she IS being visited by a doc (who she turns away and says she doesn't need anything). I felt awful before we got mom into MC. Now, I think I feel worse. She was miserable at home; she's been miserable her whole life. But now she's miserable in a strange place.
(0)
Report
I called the doctor and they took DH off one of his medications and the delusions stopped.
Helpful Answer (0)
Reply to RayLinStephens
Report

Before she was moved to MC, my 84 y.o. mother was calling my sister up to and more than 25 times a day. Screaming, yelling, "Get me out of here!" She was in rehab at the time, after a 4-day hospital stay. It obviously was a state of extreme agitation on her part (not on any meds at the time) and of course, made my sister's life hell. Mom left some messages but sis deleted them. Now in MC, her room has no phone. She asks the staff to call us, and they delay her or say "Your daughters are at work now." Or "we left a message for them to call back." Granted, my mother is in a 5-person group home and the other residents are much further "gone" than Mom is, so they can give her the attention she needs. We have only recently started to visit, because when we visited in the rehab, we caused "catastrophic reactions," which resulted in her once escaping from the rehab facility. It wasn't a memory care-equipped place; she had an ankle bracelet that tripped an alarm.

It may be an odd blessing in disguise - at least that's how I view it - that rapid decompensation from stress and anxiety, while hellacious now for everyone, may push him past the point of being able to make those calls. I truly get the extreme frustration and annoyance with the constant repetition. We had gotten that from Mom for years before this thing kicked in to high gear.

I would suggest removing the phone from the room. Blame it on the MC facility saying they chose to remove phones for cost purposes or something. If you are able to get support from a local group (usually free of charge), do it. It helps to have an outlet with people who understand, have been there and done that. Good luck to you.
Helpful Answer (3)
Reply to shb1964
Report

@Toadhall
That is a great suggestion, thank you. Unfortunately - or fortunately? - he still knows how to use the phone and my regular home number is stuck in his head. We have tried getting him a pre-programmed phone with pictures of us that he can just press to call but he still returns to the keypad and punches in the numbers that are stuck in his brain. :(
Helpful Answer (0)
Reply to AlwaysExhausted
Report

Thanks for replying. I should have noted that I don't take his every call. I talk to him once per day only, but that does not stop him from repeatedly calling and leaving his delusional messages. I work from home with a complicated communications setup and cannot block his calls. He doesn't talk about his worst delusions with the staff, only to his kids, and it is so stressful! We don't try to correct him or anything like that, just redirect him to other topics, but he always returns to his most obsessive beliefs. He has been on new meds for about 6-8 weeks now and they don't seem to be helping yet. It's gotten to the point where I cringe every time the phone rings or whenever I see the message light blinking. I wish there were something else I could do. I know this isn't his fault and it is the disease but I still struggle with it.
Helpful Answer (1)
Reply to AlwaysExhausted
Report
Toadhall Mar 12, 2019
Just a practical suggestion here. Get a cheap prepaid cell phone. Give him that number and make sure to erase the home number from his phone and anywhere else. Turn the cell phone off and put it in a drawer. He can call all day and leave all the messages he wants. You never have hear the phone ring and you never have to listen to the messages. Continue to call him as usual.
(12)
Report
See 2 more replies
I know this can be stressful. I'd try to meet with the MC staff and discuss what is happening with your dad. These people are professionals and they are able to address residents with significant dementia and their delusions/behavior. I'd practice letting go and letting them manage his care. I would also stop receiving the repeated phone calls. The facility can reach you in case of an emergency. I'd consider that the repeated calls are due to him forgetting that he has already called. So, the stress for you is not helping, since, this repetition will continue. This can also become an obsession. I'd plan a time that you can call him for a chat, perhaps after you get off work.

I'd ALSO discuss his agitation with his doctor. Mental anguish is no less painful than physical pain. I'd explore medication to help him with the anxiety and obsessions. It really helped my LO who was in MC. She went from crying and worrying constantly, to be being very content. She takes Cymbalta, but, everyone is different. I'd inquire if your dad would benefit from something.
Helpful Answer (4)
Reply to Sunnygirl1
Report

My mother,with dementia, suffered from extreme delusions and hallucinations. People coming through walls, spy cameras in the ceiling lights, she rationalized them all and totally believed them.

Its a tough, but maybe you don’t need to answer his every call. Give him 2 calls a day that you answer. When my mother started calling me at 3AM, I turned off my phone. Nothing awful ever happened. Don’t spend hours trying to convince him something isn’t so. You can’t any more than I could convince my mother the nursing home wasn’t spying on her. The Memory Care is being paid to care for him. It is staffed with people who are adept at redirection and “soothing” upset residents. Let them handle it. You do not need to be involved in every episode to the point you are at now, stressed, anxious and sad. Trust the staff at the MC to help him.
Helpful Answer (7)
Reply to Ahmijoy
Report

Ask a Question

Subscribe to
Our Newsletter