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chantell123 Asked February 2018

Does anyone else have a loved one with Dementia who yells, screams & calls out for you 24/7? Everything is happening so fast.

This is all very new to me, my grandmother had some short memory issues for the past 3 years, earlier in 2017, I noticed she was starting to become more irrational and do random things. However she was still very independent, she could be left alone and if a person didn't know her they wouldn't notice anything off about her. In November she missed a step, fell and we rushed her to the hospital. Everything went down hill from there, she now hollers all day and night. We checked for uti's and other things just to make sure she isn't in pain. She doesn't eat much and lost a ton of weight. She refused to walk I'm assuming because of the fall, however she can. I think she suffered from delirium but the thing is she never bounced back from it. In October she was complaining saying she wants to get out the house and singing on the choir stand, now she refuses to leave the bed. I'm her primary caregiver and it's ruff. I feel guilty to complain but it's really hard (I'm her grandchild) I have 4 kids and my youngest is 15months, I'm also going through a divorce so it's very hard. My mom comes over everyday and often misses work because I'm so tired from the night before. My grandmother calls out for me every second of the day but she sundowns and night and I don't know what to do. She takes Paxil. They had her on Xanax as needed but those didn't even make her sleepy. She's up all day and all night everyday maybe napping 30 mins. My main concern is the calling out and screaming every night. Help me! Help me come quick is what I hear all night. I'm falling on the ground. Now she calls out for random people who she hasn't seen or heard from in years. She now has a twitching in her hand which concerns me. She was rushed to the hospital in January, her sugar was very low. So now we know she's diabetic. She has become someone I don't know. If anyone has any advice it would be greatly appreciated, as I stated earlier this is all very new to my family and I've done all the researching I could but sometimes the best advice comes from those who have lived it. I fear that this is becoming to much for me to handle and I don't ever want to put her in a home. I just wish she would calm down and stop hollering. Thanks for listening!

SnoopyLove Feb 2018
Chantell, reading more about your situation it is obvious that you are a woman of great strength, determination and compassion! And I think sometimes it is harder for the super-strong folks like you to see that a situation is truly beyond what they can cope with, as they are usually able to do so much -- to the extreme! Definitely, time to make a change.

Please also don't fool around with or downplay your sleep deprivation as you start addressing grandma's long term needs. (Could your mom or another family member start spending the night so you can sleep uninterrupted, while other care is being found for grandma?) Apparently, driving while sleep-deprived can be the equivalent to driving drunk. Not that you're getting out much right now, but this entire situation is unsafe for you in many different ways.

anonymous409206 Feb 2018
Chantell123, you have a great deal of sympathy from readers of this thread - many of us have "been there" - but you cannot continue to manage all this on your own without professional help. Sleep deprivation is dangerous - this is not the interrupted sleep of parents with teething children, this is sleep deprivation accompanied by constant worry and fear of something bad going to happen.
This punishing routine with your grandmother would be bad enough for a single person without a family, but for a now single mother with a working mother, it is impossible for both of you. The trouble is that the person you are now caring for is no longer the grandmother you used to know. Her old personality is overlaid by the frantic activity of an injured brain which effectively gives her a new persona, one that is too hard to live with.
It really is time to find a 24/7 alternative in residential care that specialises in dementia. It is not easy to organise this.
One way to do it is to arrange for your grandmother to have a full combined mental and physical  check up while staying in a hospital ward for several days in a geriatric unit. Then the hospital specialists will be able to meet and discuss her case before you (and your mother) are called in to discuss the current situation and all the options.These should be discussed with a social assistant before you even contemplate taking the patient home. Make sure you have several days to do this, don't be pushed into taking her home earlier than you really want to.

Depending on where you live, there could be a whole array of options, from home help up to full residential care, but use this period to catch up on your sleep,  your work and home life,  your children, and having evening heart-to-heart chats with your mother. 

Good luck with what happens next, but do not be afraid to ask for help and also for time out.

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HolidayEnd Feb 2018
Well chantell123, you are in over your head and your ‘patient’ kind of came to you in the way your grandma suddenly has mentally declined and you were living in the same house. The children must take up a lot of time and they are the ages when you, as their mom, should be spending time with them.

One thing you mentioned was your grandma takes Paxil and Xanax. Paxil is a terrible drug, it doesn’t help mood and is ADDICTIVE. Many people get on it and then, because of bad side effects, try to discontinue taking Paxil and feel as though they are losing their mind! Xanax has the opposite effect on some people and they get riled up instead of relaxing them.

But if you haven’t had your grandma assessed for mental status and cognitive abilities then by all means do so. Or get your mom to schedule this at a Geri Psych Unit in a psychiatric hospital. The patient usually stays about a week and a psychiatrist assesses her thoroughly.

I have had patients like your grandma when I worked as an RN about an eon ago. It was hospital setting but one lady hollered ALL NIGHT! “Honey?! Honey come here! Honey I need you!” I was Honey. She was fine, just confused. I checked her hourly all night. She finally went to sleep a couple hours. BUT, my point is, I had the lady as my responsibility for 12 hours and I went home and slept. My daughter slept without hearing that lady.

Your grandma needs the assessment and then you and your mom need to decide what would be best. After assessment would be a good time to place her in assisted living if you find a good one and can afford the rent.

Things will work out. Have Faith!!!

Countrymouse Feb 2018
Chantell I'm only guessing but I'd have thought it more likely that some unseen change within your grandmother's brain caused the fall, rather than the other way about.

Did the CAT scan include her head?

Any other health conditions, remind me?

chantell123 Feb 2018
Countrymouse, my mom comes everyday to help me. But days like today she must go to work and I'm delirious from no sleep. My aunt will come time to time and sit with her. But myself and my mom are the ones who put in the work. I'm the one who never leaves the house and I'm up with her every night. They have tried her on a few different meds but she still stayed up at night. This is all very new and I wasn't aware that a fall could cause such a drastic change mentally. Besides the fact I'm emotionally drained from personal problems now this I just don't understand. Her memory was declining but she was fully functional far as bathing, walking, talking she was fine but as soon as she fell she sometimes doesn't remember me or family. October 2017 she was able to stay home alone, now she will scream if she's left alone for 5mins.

chantell123 Feb 2018
BarbBrookyln, she has had X-rays and cat scans. Nothing is broken and she can walk fine when she has a good day, she has come up in her mind that it's safer to stay in bed. I get her up on her recliner everyday but as far as leaving the house or even coming out of her room it's a struggle and fight.

Countrymouse Feb 2018
Chantell123 not my mother, but a lady in the hospital bed opposite the friend I was visiting kept up her calls of "Tony! Chris! Tony!" for the full hour I was there. She was sure they were walking past the door, looking for her but not spotting her. Turned out "they'd arranged to meet at the café but she'd got separated from her family and 'now I don't know where anyone's got to,'" she said. How she explained to herself, in her own head, that she was in her nightie in a hospital bed talking to a strange (but kindly, I hope!) woman... who knows.

This is a fragmenting brain trying to make sense of what it can still perceive. If it's worrying for us, it hollows me out to imagine what it's like to be in that person's head.

You can't do this on your own at home, you know. What support do you currently have with taking care of your lovely grandmother, apart from your mother?

Has a geriatric specialist, a good GP who knows her extremely well, or somebody like that sat down with her px and her latest results and done a really thorough review of her care management?

BarbBrooklyn Feb 2018
What does her doctor say about her refusal to walk? My mom fell and the initial xrays showed no breaks. Her PT, after noticing that she wouldn't bear weight on one side, got another xray. Her hip was broken.

It sounds like grandma might be in pain. Dementia patients are not good and telling they are in pain.

You need to talk to her doctor today about how things are going.

chantell123 Feb 2018
BarbBrookyln, My mom does care for my grandmother, however she works full time and has her own home. As I stated I'm going through a divorce and have never returned to work since I had my daughter I just took on the role. I've lived with my grandmother throughout my teenage years and we are extremely close. It just made sense to go back home to get things in order, but my grandmother was fine until a few months ago. My aunt on the other hand does come over a sit with her but she doesn't help with the hard stuff like assisting with bathroom duties and changing number 2. But I guess everyone handles things differently.

BarbBrooklyn Feb 2018
Placing a loved one in a care facility where they get the benefits of professional care and socialization can be a good thing.

Start by getting her to the doctor and get her on meds to help her sleep.

How do you, and not your mom or aunt, come to be caring for grandma?

chantell123 Feb 2018
Snoppylove, thank you for your comment, I have thought it over and over and I'm going to talk it over with my mom and aunt. I just feel like she doesn't deserve to be thrown in a home when she's in good health her mental is just wearing down. If I could get her to sleep at night I could hang in there. But it feels good to know I'm not a horrible person for exploring the thought. Thank you again

chantell123 Feb 2018
Smeshque, thank you so much for your encouragement, it means so much to me. This has really been testing my faith, I'm so tired and have grown weary but I know he will not fail me. But it's hard to see things being better when I'm in the midst, and can't seem to find strength.

SnoopyLove Feb 2018
This situation sounds unsustainable. Four kids, youngest 15 months, and you are going through a divorce. Your children need you, you need your rest and sanity. In my opinion the well-being of your children has to come first, not that of a demented grandma who unfortunately isn't going to get better. Your children presumably are hearing all the shouting at night, which can't be good for their sleep.

Time to find a good quality facility where you can visit often and continue to be a very loving granddaughter.

smeshque Feb 2018
Dear Chantell, this must be such a trying and difficult time in your life. You sound like such a loving person and dutiful as you are caring for her. Please do not give up nor lose hope. My best advice is pray. Pray for the strength, patience, love that you need, and courage to go through and do what you are doing. You have a heavy load, but my dear it will not be forever, hang in there and take care of your spirit, and your relationship with Jesus and you will be able to make it through anything. If he brings you to it, he will bring you through it. You are not alone in this there are a lot of people doing exactly what you are doing and going through what you are. You already show a tremendous strength and love, O know it is difficult but the answers will come. Best wishes and I am praying for you.

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