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Mum persistently crying and sobbing. How to deal with it?

Max68

Registered User
Aug 21, 2018
117
0
Sussex
Hi all. Been a while so hope all are safe and well during these awful times.

Mum has been in her care home now for nearly a year and a half. My sister eventually agreed that we had to sell her house so that was all done over the summer and autumn so most of mum's affairs are now sorted.

Obviously she has been very up and down and like for everyone it has been very difficult in the current climate due to lockdowns, appointment visits only and Perspex screens at the care homes. She was getting agitated during the summer so the GP advised that she went on an anti depressant that seemed to have worked quite well and visits in September were actually really good with mum looking brilliant physically and she seemed calmer mentally with some amazing improvement with her memory and her dark sense of humour had returned.

However the last few weeks have been awful with mum continually sobbing and crying and sitting behind a Perspex screen is a nightmare! She has been very confused and knows something is not right as she always says that her "brain is not working" and that she can't remember anything. Last visit when I and my sister left she shouted at me that she wouldn't leave her mum like that, which was like a knife in the heart but all part of dementia sadly.

This morning I received a call from the home saying she was inconsolable and they couldn't calm her down so would I talk to her? It was difficult to say the least over a phone so I managed to book an appointment tonight. The home have from this week got these rapid tests so I am going to purchase one, have the test and that will hopefully allow me to give mum a hug for the first time in months.

Thing is how do you all deal with this uncontrollable sobbing? She says no-one visits her, which of course isn't right but she forgets and she forgets that both dad and her sister have died so it's a nightmare explaining that every time. I just really don't know how to leave at the end of a visit because she thinks that we are only there for a cup of tea and I will take her home afterwards. I just don't know what to do for the best? Is it worth asking the GP to increase the anti depressants? Is this sobbing a normal part of dementia? It's just so difficult so any advice would be appreciated.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,747
0
Bristol
Oh, so hard for you @Max68. I'm not a big fan of anti depressants as they didn't work for me 20 years ago, but others may have better experience. The days when my OH is aware of her problems are the hardest to deal with and she can get very depressed by just not being able to do what she once could without thinking. I do totally sympathise with you and feel for your mum.
 

lemonbalm

Registered User
May 21, 2018
1,408
0
Hello @Max68 . It's heart-rending to see our mothers like this. My mum has been in her current care home for over two years now and we have found that regular reviews of medication have been essential. I think it is worth asking about. The fact that your mum has been happy there is a good sign that she can be happy there again. I assume the staff have checked for the dreaded urine infection........ Do you send her little gifts by post? I do this for my mum and she seems to enjoy receiving those.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,876
0
Hi @Max68 . Have you seen this thread Compassionate Communication with the Memory Impaired? I just wondered if when your mum starts talking her sister and your dad you distract with something non committal. When mum asks after her parents and how they are I say something along the lines 'of no I haven't seen them very lately, but I know they are fine.' As for leaving at the end of a visit I always waited till mum went to the loo and then vanished. Other people have left their bags and coats in the car or the manager's office and then said they had to go to the loo and went, or wait until a meal is being served and leave when your mum is distracted. Certainly my mum would want to come home with me if she saw me leave.
I just hope you can get to give her a cuddle and calm her down.
 

Hazara8

Registered User
Apr 6, 2015
617
0
Hi all. Been a while so hope all are safe and well during these awful times.

Mum has been in her care home now for nearly a year and a half. My sister eventually agreed that we had to sell her house so that was all done over the summer and autumn so most of mum's affairs are now sorted.

Obviously she has been very up and down and like for everyone it has been very difficult in the current climate due to lockdowns, appointment visits only and Perspex screens at the care homes. She was getting agitated during the summer so the GP advised that she went on an anti depressant that seemed to have worked quite well and visits in September were actually really good with mum looking brilliant physically and she seemed calmer mentally with some amazing improvement with her memory and her dark sense of humour had returned.

However the last few weeks have been awful with mum continually sobbing and crying and sitting behind a Perspex screen is a nightmare! She has been very confused and knows something is not right as she always says that her "brain is not working" and that she can't remember anything. Last visit when I and my sister left she shouted at me that she wouldn't leave her mum like that, which was like a knife in the heart but all part of dementia sadly.

This morning I received a call from the home saying she was inconsolable and they couldn't calm her down so would I talk to her? It was difficult to say the least over a phone so I managed to book an appointment tonight. The home have from this week got these rapid tests so I am going to purchase one, have the test and that will hopefully allow me to give mum a hug for the first time in months.

Thing is how do you all deal with this uncontrollable sobbing? She says no-one visits her, which of course isn't right but she forgets and she forgets that both dad and her sister have died so it's a nightmare explaining that every time. I just really don't know how to leave at the end of a visit because she thinks that we are only there for a cup of tea and I will take her home afterwards. I just don't know what to do for the best? Is it worth asking the GP to increase the anti depressants? Is this sobbing a normal part of dementia? It's just so difficult so any advice would be appreciated.
One of the most challenging aspects of dementia is in coming to terms with an untruth and acting just the complete opposite. The "reality " which is that of dementia is as real as our own. Thus one learns , often the hard way, that to attempt to explain or correct a given notion can prove both impossible and detrimental. Sobbing is clearly for a reason, but often it has no specific cause in dementia. Feelings play a huge role and within that framework of a given " reality" any contradiction however meaningfully intended, can exacerbate the problem. Anti depressants have their place. That is a clinical decision. These current times are profoundly challenging for everyone engaged with dementia and loved ones in Care Homes. Dementia does not recognise any of the restrictions of course. Therein lies a huge dilemma. Barring any physical reason for a change in behaviour (UTI'S etc) then " comfort" is the watchword and that can never be overemphasised. And yes, distraction plays its part very significantly too. None of this is easy. But if one can touch a spot in the loved one that one truly knows and which is a source of joy, even though it is perhaps a source long past , then go with it. Dementia allows for that because it forgets and in forgetfulness resides the means by which a "communication" can take place.

In the Home which l frequented fir some years, l found that distress and sobbing in a resident almost always responded to that basic comforting " touch" over and beyond words. That is a luxury denied so many at present and l have profound sympathy for anyone who cannot apply such a basic gesture of love. But with some light over the horizon that might well change before too long.

With warmest wishes.
 

Max68

Registered User
Aug 21, 2018
117
0
Sussex
Thank you so much for the replies and I will certainly browse over that link you kindly sent Sarasa, I sincerely appreciate you all replying.

Just a little background. Mum lived alone after dad died back in 2000. She was very active with golf until only a few years ago when the strength just left her. In January 2018 she lost her best friend and her sister on the same day and understandably fell of a cliff mentally. I took her to the GP's several times and she was diagnosed with depression due to shock. In September ish of that year I persuaded her to go to see someone at the local clinic because I was concerned about her decision making and the last straw was when she got in a van with some roofers who had knocked on the door to get money out of her bank to pay them. Fortunately she went to the cash point at the garage where my brother in law works or I would never had known. I then started helping her more with her finances at her request and saw that she was being taken for a ride by her gardener. It kills you because you feel that you should have seen it but you know what mums are like, headstrong and independent.

At the clinic they diagnosed her with mild cognitive impairment, and I can remember thinking what on earth would severe be like, because this was far from mild in my view. So nothing you can do as many of you will know unless the person themselves wants that help. In April 2019 she had a fall down the stairs so we managed to persuade her to get a stair lift but she couldn't work it. I was close to moving back in at that point as I was putting stickers on things like the cooker to help her, it was an incredibly quick deterioration.

In May she rang me one morning to say she was ill with a tummy bug. I went over and saw things a son should never see. She went to hospital where they nearly sent her home but fortunately my ex knew a consultant there so they kept her in for tests. She was in hospital for 9 weeks, picked up delirium and then she was on a dementia ward for 3 weeks. It was a nightmare but eventually through hospital, social worker etc she was diagnosed with dementia and lacking mental capacity. I still wonder if we should have done more or did things differently.

Just a little background on the medication decision at the care home. Mum has a mix of vascular and Alzheimer's and was basically getting a little violent due to frustration with some of the carers, who are fabulous I must say. That is totally and utterly out of character as the last time mum hit anyone was probably me when I stole some sweets from a shop in about 1977 and richly deserved it was too!! I believe it was more open hand slap due to refusal of getting dressed, eating, that kind of thing. Mum was also losing a lot of weight at that time and suffering some falls due to being so headstrong that she would get up without asking for help and she didn't have the strength in her legs. The GP liaised with both the home and my sister and I and we decided to see if some medication made a difference just to calm her down a bit. Not sure what the meds were off the top of my head but they did work to extent and from what I can gather the violence has gone, she is generally a lot calmer and she physically looks great and eats well.

The sobbing started in earnest the last few weeks although has been there on and off from the start. I did get to see her last night and it was up and down but on the whole great. I had the new rapid covid test at the home so could give her a hug for the first time in months. She said she was upset because the "little ones were on their own", meaning me and my sister who at times mum thinks are still around 7 years old! Apparently a lot of residents get quite upset at around 3pm because they think that they should be picking their kids up from school. She also got upset because she didn't have any money for a taxi back from the golf club although obviously the dementia strangely makes mum seem to think that she goes out for the day. She says no one visits her, where have her friends gone and last night asked "why me with this dementia?" so she clearly knows in many ways.

She asked where her sister was three times and where her brother was. Her sister died three years ago and her brother sadly drowned when he was about 7. We have tried the distraction technique but the difficulty comes with when it doesn't work and when you say someone is fine she gets upset because they haven't come to see her,. With dad she thinks that he ran off with someone else so after discussion with the home we all decided it was "less" hurtful to tell her the truth that he died because we couldn't let her think that he left her by running off.

Prior to covid we did leave when she went off for lunch or dinner or went to the loo but with the appointment system it's difficult at certain times because you may see her in the middle of the afternoon or another time when lunch or dinner isn't close. Plus you only have an hour or so visiting time so she may suddenly want the loo after15 minutes and you don't want to walk out then. It was far easier when you could dictate the times you went in and could structure your leaving.

Using her interests as a distraction is also a difficult one. She doesn't remember her old favourite tv programmes and she was an avid reader and player of puzzles and crosswords which she can't do now. I have asked the home to try and do jigsaws with her and put on the golf or Strictly Come Dancing on telly but of course especially in these awful times you don't know if the carers remember to do that. That's what's so frustrating, she did all the memory/brain games/sudoku, watched all the quiz shows, stayed active and was an avid reader and still ended up with dementia!!

I'm wondering if some sort of scrap book with pictures and dates would help at all? It would certainly help the carers if they knew who people were and what happened to them but I'm not sure if old photos of dad and her friends would upset mum more?

It's clear that much of the tears are due to frustration and she says that she knows she was independent and an organizer and she can't do that now. I can't imagine how bad that must feel., I will however use the advice here to see if that helps and I hope that these new rapid tests will alleviate things as we can at least now give her a hug rather than sit opposite a Perspex screen!

Sorry for the long winded boring post, but it's actually helped me get it off my chest.
 
Last edited:

canary

Registered User
Feb 25, 2014
14,980
0
South coast
It is a feature of dementia that memories become all mixed up and old memories feel like recent ones. People with dementia frequently do back a few decades to when they are first married and have young children, later they often go back to their childhood and want to know where mum and dad are :(
With dad she thinks that he ran off with someone else so after discussion with the home we all decided it was "less" hurtful to tell her the truth that he died because we couldn't let her think that he left her by running off.
The trouble with this approach is that every time you tell her that someone close to her has died it is like the first time she has heard and it can be a shock and devastating for them. She wont remember the fact, but she will remember the emotions, so having been told that her husband and/or relatives have died she will still maintain that feeling of shock and grieve all over again. Even when she has forgotten why, she will still remember that something terrible has happened.

With dementia, truth is not always your friend. Try coming up with a different "reason" why relatives have not visited. Maybe their car is broken, but just as soon as its repaired they will be coming, or perhaps they are on their way and stuck in traffic....
Did her husband ever work away from home, or work night shifts? If so, perhaps this could be a reason that he has not visited, that isnt that he has left her, or that he has died - both upsetting thoughts that will leave her with negative emotions.
 

Max68

Registered User
Aug 21, 2018
117
0
Sussex
It is a feature of dementia that memories become all mixed up and old memories feel like recent ones. People with dementia frequently do back a few decades to when they are first married and have young children, later they often go back to their childhood and want to know where mum and dad are :(

The trouble with this approach is that every time you tell her that someone close to her has died it is like the first time she has heard and it can be a shock and devastating for them. She wont remember the fact, but she will remember the emotions, so having been told that her husband and/or relatives have died she will still maintain that feeling of shock and grieve all over again. Even when she has forgotten why, she will still remember that something terrible has happened.

With dementia, truth is not always your friend. Try coming up with a different "reason" why relatives have not visited. Maybe their car is broken, but just as soon as its repaired they will be coming, or perhaps they are on their way and stuck in traffic....
Did her husband ever work away from home, or work night shifts? If so, perhaps this could be a reason that he has not visited, that isnt that he has left her, or that he has died - both upsetting thoughts that will leave her with negative emotions.
Hi yes, dad worked away a lot, both home and abroad. She focused on him a lot at the start but thankfully not so much recently, it's more her sister and brother now. Maybe the deterioration means that she has gone further back now but she seems to recognise me and my sister ok and constantly talks about her grandson even when we are not there. The only time she mentioned dad last night was when she introduced me to a carer as her husband!!
 

canary

Registered User
Feb 25, 2014
14,980
0
South coast
The way their memory goes back in time is not consistent - even in the same sentence!!!
It is very common in women to think that their sons are actually their husband. Unless its likely to cause problems I would let it pass, neither contradicting, nor reinforcing, this delusion.
 

Max68

Registered User
Aug 21, 2018
117
0
Sussex
The way their memory goes back in time is not consistent - even in the same sentence!!!
It is very common in women to think that their sons are actually their husband. Unless its likely to cause problems I would let it pass, neither contradicting, nor reinforcing, this delusion.
Thank you. No it doesn't cause any problems so I just wink at the carer and we leave it at that. It can have it's amusing moments and I did get one last night. Mum said quietly that there were two women who were very jealous of my intelligence. Not sure where that came from I was quite chuffed and said "really?" She looked me up and down and said, "oh not you, I meant my grandson!" Shot down in a sentence!!
 

canary

Registered User
Feb 25, 2014
14,980
0
South coast
Mum said quietly that there were two women who were very jealous of my intelligence. Not sure where that came from I was quite chuffed and said "really?" She looked me up and down and said, "oh not you, I meant my grandson!"
Where have the emojis gone?!!
I wanted to post three laughing behind hand emojis!
 

lushr

Registered User
Sep 25, 2020
124
0
@Max68 i am going through the exact same thing... and the head nurse has actually said would we like to draw a line in the sand so i cannot be called every day to “fix” things... you know, they are trained at dealing with this and distracting mum, and often i seem only to make it worse, but like you say it HURTS it’s a shock to the system, and having to drop everything to get there and help... and feeling helpless and trying to find the right lie, the right, magic thing to say.

it took a toll on me, i’ve been sick for two weeks. i’ve stopped the emergency support calls.... and she’s doing ok sometimes but miserable most of the time, and knowing my mum, she will stay that way,

your mum was doing really well, so it’s likely this is just a phase. and if it continues they can look at adjusting her medication to help her.

and my mum seems to think i’m her sister...so ... yeah....
 

Max68

Registered User
Aug 21, 2018
117
0
Sussex
@Max68 i am going through the exact same thing... and the head nurse has actually said would we like to draw a line in the sand so i cannot be called every day to “fix” things... you know, they are trained at dealing with this and distracting mum, and often i seem only to make it worse, but like you say it HURTS it’s a shock to the system, and having to drop everything to get there and help... and feeling helpless and trying to find the right lie, the right, magic thing to say.

it took a toll on me, i’ve been sick for two weeks. i’ve stopped the emergency support calls.... and she’s doing ok sometimes but miserable most of the time, and knowing my mum, she will stay that way,

your mum was doing really well, so it’s likely this is just a phase. and if it continues they can look at adjusting her medication to help her.

and my mum seems to think i’m her sister...so ... yeah....
Thanks for the reply. Totally understand where you are coming from. My sister saw mum yesterday and mum was talking about suicide again, saying that she wished that she had taken some pills etc etc. Thing is both my sister and I can understand that and I feel awful saying this but I just wish mum would go quietly in her sleep. It would "almost" be better in some ways that she was next stage, because at the moment she knows something is not right and she isn't what she was whereas further down the line she might be oblivious to her previous self and the life that she had.

It again sounds horrible saying this but with animals we put them out of their misery so to speak if they are ill with no chance of recovery but with mum the doctor still ply's her with her usual medication to keep them "physically" well but can't do anything about the mental decline which seems incredibly cruel, although I totally understand that the GP's are only doing their job and cannot do anything else.
 

silkiest

Registered User
Feb 9, 2017
280
0
Hi @Max68, some people with dementia find babies and animals calming. I have seen various things on social media recently with care homes raising money for lifelike baby dolls or animals. Do you think either of these could give her some comfort?
 

Hazara8

Registered User
Apr 6, 2015
617
0
Thanks for the reply. Totally understand where you are coming from. My sister saw mum yesterday and mum was talking about suicide again, saying that she wished that she had taken some pills etc etc. Thing is both my sister and I can understand that and I feel awful saying this but I just wish mum would go quietly in her sleep. It would "almost" be better in some ways that she was next stage, because at the moment she knows something is not right and she isn't what she was whereas further down the line she might be oblivious to her previous self and the life that she had.

It again sounds horrible saying this but with animals we put them out of their misery so to speak if they are ill with no chance of recovery but with mum the doctor still ply's her with her usual medication to keep them "physically" well but can't do anything about the mental decline which seems incredibly cruel, although I totally understand that the GP's are only doing their job and cannot do anything else.
It is very difficult to perceive a mind which no longer can rationlize, which lives to a great extent " in the moment " - that being their true "reality ". Emotions are no longer under any control nor often linked to a specific thought because the brain has been damaged from whence emotions derive. Paranoia and bizarre imaginings are not so with the one living in dementia world. If family members long deceased are still functioning within this dementia psyche as " real ", then that is as real as your own reality in essence. That is why one discovers that to " enter" dementia world and enter with integrity and heightened awareness, can help resolve many ' behavioural ' problems. "Therapeutic fibbing" is notn immoral, because one becomes compatible with a living untruth which governs the life of a loved one. This is a genuine challenge of course. But sometimes " best interests" requires actions beyond the purely clinical. And l have seen astonishing transformation in a Care Home resident by simply "going with the flow " despite the flow being a complete fantasy. The trick is in seeing the fantasy as completely authentic and profoundly so. Not easy when one enjoys capacity.
 

Max68

Registered User
Aug 21, 2018
117
0
Sussex
Hi @Max68, some people with dementia find babies and animals calming. I have seen various things on social media recently with care homes raising money for lifelike baby dolls or animals. Do you think either of these could give her some comfort?
Hi, can't speak for baby dolls but animals are a no go and funnily enough never have been with mum. They take a dog in sometimes, or they did pre Covid, I was with her that day and mum couldn't stand it, so doubt animals would help with her.

I've seen pictures in a scrap book of her taking part in activities involving balls or bean bags etc but she looks positively bored. She regularly says to me that it's like a school and they do childish things which annoys her but again how much of this is memory/reality or as Hazara8 says fantasy I don't know!

She seems to do the flower arranging, which oddly enough she did when she was younger, but her "interests" were cooking, reading, crosswords, puzzles etc, which are obviously either difficult or impossible now. Bar the sobbing she isn't at the childlike stage and clearly mentions that her independence has gone although finding it difficult to understand why. I think in their mind they can still look after themselves but obviously reality is different.
 

silkiest

Registered User
Feb 9, 2017
280
0
Yes @Max68 I can understand that. As my MIL deteriorates she cannot do her old pastimes ( mainly reading, crosswords and gardening) so is bored at home, but she thinks she does everything for herself, forgets the hours of care she is receiving each week and gets irritated each time someone comes to her door.