My Mom (78) had a severe stroke 2 months ago and does not want me to visit her in the place she is in. Any advice?

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I am very upset. is in a place called Trump Pavilion in Jamaica, Queens. The stroke was severe and I heard from my brother, an attorney who has power of attorney and proxy status that she has had very little improvement over the course of her therapy. She can't move her leg, let alone walk or stand, and her arm is totally paralyzed. I am going crazy not seeing her or speaking with her.

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Hi Scott. I haven't been in touch for a while because - well, it's interesting really - because now we're in the same boat. My mother had two strokes on Sunday. The first one was frightening but seemed to be resolving, then twelve hours later, when we were already in the hospital, she had another, much worse one.

So at least now I can tell you what condition a person is in soon after a major stroke.

I know you'll think I'm lucky because I can visit my mother and talk to her. So I can. But I can't really talk to her, and she certainly can't have a conversation with me. She needs sleep and rest, so all I do is sit quietly by her bed and read; and one of the nurses showed me how to use little sponges to moisten her dry mouth, so I do that too. I found Barbara Kingsolver's book "The Lacuna" waiting on the shelf at home - it's been there for ages and I haven't had time to open it. It's a good, thick juicy work by a really good author. I'm probably not giving it the attention it deserves, but when all you can do is wait and see it's good to have something else to concentrate on.

I tell her I'm there, and that everything is ok, and she mustn't be afraid. This is true, because whatever happens to her she has good, caring people around her who will make sure that she is not frightened or left in pain. I'm not making her any promises that she'll get better because we can't know that.

She is more or less paralysed down her whole left side. Her hand is curled in, which is probably a bit like having cramp and might be painful, but when I ask she doesn't answer. I expect she is so tired all over that she wouldn't notice her hand. For a while she couldn't swallow, but that has settled a bit and now she is being given thickened fluids. They add a kind of colourless starch - not cornflour, but like that - to her drinks so that they don't go down the wrong way and make her choke. It keeps her safe, but it feels disgusting - like drinking glue. She has compression socks on her lower legs that automatically inflate and deflate to massage her and stop her blood from clotting because she isn't moving around. The machine they're attached to makes a noise like a farting donkey, once or twice a minute. I couldn't stand it. I feel sorry for the three other people on her ward. I don't know how they can sleep for all the machinery beeping and buzzing and humming. She has a tube with two soft plastic prongs that go one in each nostril to mix oxygen in with the air she's breathing. Her heart function is very poor anyway, and her brain needs oxygen badly to recover, but she hates the tube and she hates feeling the air puffing into her nose. In her sleep, she reaches to take it off so I gently move her hand away from it. She would probably understand why it's important to keep it there if she were awake and thinking, but in your sleep it's natural to try to get comfortable - you wouldn't be dreaming "my brain has suffered a massive insult and needs more oxygen so I must tolerate this unpleasant sensation."

My daughter came with me to the hospital yesterday, and we were both relieved to find mother awake for a while. My mother was pleased to see her, then said to me: "Do you know X--? She's my granddaughter." We all thought it was funny but we didn't laugh at her. And actually I think my mother couldn't see me properly, and perhaps she thought she was introducing my daughter to one of the nurses. Most of the time she can't speak intelligibly at all, though - you can understand the occasional sentence, but the rest of the time she can't make the sounds loud or clear enough to be understood. I don't want her to waste effort on it, I'd rather she rested, so I just tell her she can tell me later.

I'm not telling you all this because I suppose it will make you feel better about not being able to see your own mother. Of course I don't. In fact, I'm afraid it could make you even sadder that you can't, though I hope not. The point of describing so much detail to you is to explain that I can see for myself now that there is no way your mother could comfort or help you after her stroke. She would have been totally helpless, unable to do anything except concentrate every scrap of her energy on healing her badly injured brain. I've seen for myself that I mustn't disturb or excite my mother, or even stay too long because that would make her try to wake up; and don't forget that I'm my mother's main caregiver and have been for years. She wasn't looking after me before, I was looking after her, and my company is still too much for her to manage right now except for short visits.

By now, your mother will have improved to a certain extent; but you need to understand the depth of fatigue that people endure after a stroke, and how long it lasts. I hope your mother is making good progress, but even if she is she will still be desperately tired. It takes much longer than three months to recover, and some of the damage that has been done to her brain will never get better.

You just have to wait and see. There is nothing else for it. Your mother will continue rehabilitation, and I hope it will go well for her, but you cannot count on it. She may be just too badly injured to recover well. She may even get sick again. You cannot go into suspended animation waiting for your mother to get back to normal because that is the one thing you know is not going to happen. Nobody comes back that completely from a severe stroke. So you have to find something else to concentrate on, and wait and see what happens. No one has any choice about it. That's the way it is. And now I know, I'm not just guessing, because I'm dealing with it too.
Scott, I think part of what you are doing here is writing out your feelings and working them through. You are obviously, to me anyway, a bright man and quite articulate. You are also receiving a variety of ideas/advice how to and how not to proceed.

I am concerned that your mother's sudden illness may interact negatively with your schizophrenia. You are under a huge amount of stress, and suffering major losses - viewing your mother succumb to a stroke, and feeling guilty that you didn't take all the right steps, (I hear you blaming yourself), then a little contact with your mum when you got angry and seeing her very ill and hurting and now wanting to make that right, then no contact with your mother, also you are on the edge of losing your home, you have no other support in terms of friends, you are not taking any meds, and as far as I can tell do not belong to any support group, though you are interacting here.

Veronica suggested that you go to an outpatient psychiatric department for help. I would think some sort of professional help as a support is a good idea for you at this time. Someone suggested that a mental health housing could be a stepping stone to what you really want. That would seem to make sense. I suppose there is always a men's shelter if it comes to that, but I suspect that mental health housing would be preferable.

I see that you have heeded at least some of what is being written here - you are recognising that you will not be able to speak to your mother on the phone at present and that asking people to call was inappropriate. Good.

Scott, I know what it is like to have a family member you love taken from you suddenly, and have no contact. It is very painful. I do know the anxiety/stress you are experiencing. It is normal to feel guilt about not having done enough or the right thing at these times. Please try to let go of that. What happened is not your fault. That you have schizophrenia is not your fault You are grieving the losses - your lifestyle, contact with your mother, your home of the past number of years and facing an uncertain future as regards, her welfare, being able to have any contact with her again, a home for yourself, companionship and, I am sure, more. Your mother is very ill and very likely will not get much better. Yes, your life as it was is over.

As much as many things are not your fault, e.g. loss of your home, your mother's illness, your illness, that does not mean you do not bear any responsibilities. We are concerned about you taking steps to look after yourself.

The best gift you can give your mother is not cards or phone calls, but to take good care of you. I suspect she is quite concerned about you, as you are about her. Taking the steps necessary to become self supporting, as you have already started doing, is what most parents want for their children. She will rest easier if she knows you are looking after you. It will reduce her stress.

Thanks for being so open in sharing what you are going through. (((((hugs)))))
I have not read all of the posts on this thread, but I have seen a couple where you ask if anyone has had experience with a stroke like your mom had. I can share my dad's story, but I don't know if it is anything you haven't already heard.

My dad was a very healthy, normal weight, mentally and physically fit (still golfing) 80-year-old when he had a stroke. He was doing some repair work on a rental house he owned when he "felt funny", drove home, and told my mom that he thought he should go to the ER. They admitted him to the hospital for tests. This happened on a Wednesday afternoon. I stayed in touch with my mom (I lived 100 miles away) for the next three days, and on Saturday, my daughter and I drove to my parents' town. When I walked into my father's hospital room, I immediately recognized that he had had a stroke by the way one side of his face drooped. His regular MD was out of town, and I will never know the sequence of events, but it seemed like no one was in charge of his care, and he, like your mom, did not get the clot busting drug. I was told later that his stroke did not present like the type that benefits from the drug, and it was referred to as a "progressive stroke". Anyway, when his regular doctor returned on Monday, arrangements were made to transfer him to a rehab hospital in my town. By the time he arrived at rehab, he was pretty helpless, not able to sit up or roll over in bed by himself. He was paralyzed on his right side. Fortunately, he was able to speak well enough that we could understand him, he could swallow, and he was mentally intact. He spent about a month at the rehab hospital before Medicare required that he move to a skilled care facility for continued rehab. My dad worked extremely hard at the rehab hospital because he wanted to be able to walk again. The therapists told me that they were used to patients who tried to get out of rehab sessions, but my dad was always asking for more and didn't like the fact that he got less rehab on the weekends.

Dad stayed at the skilled care facility for almost a month, and then was dismissed to go home with some home rehab services. My husband and I took mom and dad back to their home and spent the weekend adding grab bars, extra stair railings and removing the wheels from their kitchen chairs. At his request we "invented" some things similar to what he had used at rehab so that he could work on his own at home. We (and he) called them his toys.

Dad could walk again with a quad cane, and could even go up and down stairs. He walked on his treadmill daily. He was tested and cleared to drive again with assistive devices added to his car, although he only drove a few times. He remained mentally sharp, and while my mom's mental capacity was declining, between the two of them they were able to take care of their home and their finances.

Even though dad worked hard to stay healthy, his strength began to decrease, probably from a combination of the stroke and the fact that he was in his eighties. About three years after the stroke, dad decided that he and mom should sell their house and move to an independent living apartment. Mom had both of her knees replaced during the three years, and had fallen (and of course dad could not help her up), so it was a smart move on his part. I think that he was relieved to no longer be taking care of a house and yard, and liked the idea of having staff available if needed. By the time they moved to the apartment he was using a walker and had a motorized scooter.

A little more than four years after the first stroke, dad suffered a second stroke. He had just returned to his apartment after using the treadmill in the exercise room, sat down in his recliner, and lost consciousness. He was rushed to the hospital where scans showed a major stroke on the formerly good side of his brain. He never woke up and died nine days later under hospice care. He was just a few weeks short of 85.

Scott, I hope that you can see from my story that stroke recovery is hard work, and your mom may also be determined to improve as much as possible. She needs to be able to concentrate on her rehab, and stress from outside is not good for her. Although you miss her terribly at home and are concerned about her health, you could reduce her stress by taking care of yourself and showing her that you are OK. You have received a lot of advice from many knowledgeable posters here and now it seems that the ball is in your court. Get your hearing aids adjusted, get and take the appropriate medications for your mental health and work on your own physical health and fitness. That way you will be better able to help your mom down the road.
Dear, dear Scott. Re-read what you wrote: "I am sure it upsets her when I call, but what am I supposed to do." What you are supposed to do may be the hardest thing you have ever done, but it will be a gift of love for her: DON'T CALL HER. SAVE HER from being upset. Be strong FOR HER.

Think about this: In just the last day, Christmas Eve and Christmas Morning, Emjo, Veronica, Countrymouse, Jeanne, Babalou, Linda and I all thought about you and wrote you. All the people on this thread in several countries and many cities wish you well.

So...sit down today and develop a strategic plan for yourself. Where do you want to be in three months time, six months, a year? WHO do you want to be? HOW do you want to be? What needs to happen for you to get there? What steps can you take today to make things happen? Take one, just one, today, and another tomorrow. At some point you'll look back and see how far you have come and realize how strong you really are.



Scott, if you cannot face facts and admit you are mentally ill, then, yes, go to a homeless shelter. But I would rather see you take advantage of a benefit you are entitled to and accept housing reserved for the mentally ill. From the 200+ posts here I think we all want that for you.

You point to the fact that you were "only" hospitalized for extremely strange behavior twice in the last 18 months. Do you know how many times people who are not mentally ill are hospitalized in a psych ward? None! Zero!

It is like saying "I've only been in an ER for insulin shock twice in the last 18 months. I don't know whether I have diabetes."

Your behavior was so strange and so frightening to your mother that the police were involved. Since I am pretty sure that you would not do such things deliberately they are clear evidence that you are mentally ill. Mental illness can be treated and while following a treatment plan you may be able to function normally, but mental illness is not cured. You were mentally ill when you did those things and you still are.

The diabetes analogy is a good one. If I had to be treated for insulin shock I could recover, get back on the treatment plan, and live a pretty normal life. But I would still have diabetes. If someone asked me in an interview, "Do you think you have diabetes," the correct answer would NOT be "Well I've only been treated for insulin shock twice, so I don't know." It would clearly be, "Yes, I have diabetes. It is well-managed at the moment."

It is not shameful to have diabetes. It is not shameful to have mental illness. It is self-destructive to deny the obvious and not get the help one is entitled to.

How many college graduates who are not mentally ill wind up taking jobs at the absolute bottom of the barrel? Dang few!

How many adult men would live in a studio apartment with their mothers for seventeen years? Extremely few who are not mentally ill.

The evidence is all there. You can believe the evidence and tell the interviewer that you are mentally ill, or you can continue to deny the evidence and go into a homeless shelter.

Your choice.
Scott - hoarding is now listed as mental illness. You can tell the case worker at your next meeting that you are a hoarder and mentally ill, and need help. Prayers are continuing.
Send her a card, send her flowers, call once a week. She will come around to you, she is just embarrassed and needs to get over that.
Scott, I'm the one who signed off. I'm NOT angry. I'm frustrated by your lack of understanding of the right step to take despite your obvious intelligence and a chorus of mother substitute ladies here, ALL of whom are telling you what to do. CALL YOUR social worker. CALL HER TOMORROW. No one else can get you help or help you right now. You are mentally ill and need assistance.

Scott, I hope you realize that we are mostly ladies of just about your mom's age. We are telling you to do what your mom would tell you to do if she were well enough and probably in truth what she's been telling you to do for the past several years. CALL YOUR SOCIAL WORKER.

can't write more it keeps getting erased but you get the idea. how would you cope if Mom did come home. I hope you have read about some of the challenges other caregivers have been going through and give all this some deep thought. There is no way you could do this so be thankfull you have a brother who has taken charge and will keep Mom safe. Now get yourself straightened out and sometime in the future mom may be ready to talk to you again when she gets stronger and the hurt of whatever happened that night fades from her memory.
Your mother is totally dependent on Michael.
She has to co-operate with him.
If he feels it is bad for her to be bothered by you whining he will prevent you from seeing her.
He has that power you do not.
So grow up and stop wasting our time or if you can't do that do what the social worker wants and admit to mental illness.
If you go into a homeless shelter and carry on the way you have here someone will hit you for sure.
Do you know how many homeless are mentally ill?
Well I don't either but it is a large number. So what is the difference from being in mental health housing or a homeless shelter?
I will tell you.
In mental health houseing you will have a case worker who will make sure you are alright not push you out the door in all weathers first thing in the morning.
But have it your way and don't pay attention to us we are just a bunch of caregivers.
What do we know. Enjoy the shelter.

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