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

[canary]

have you got any more answers for OH @canary

Unfortunately not

 

[Max68]

Best wishes to all of you it is horrendous isn't it.

I got a phone call from the home this morning at 7.30 saying mum had another fall. Three in 24 hours. Face was heavily bruised and droopy so the inexperienced night nurse called an ambulance. I spoke to the paramedic who said he wasn't sure but mum might have had a stroke and advised she went to hospital. We have an Advanced Care Plan, DNR and LPA wishes for mum but the paramedic advised I spoke with the GP with regard to a Respect Form.

Mum went to hospital, had a CT and they noted a small bleed that showed up compared to her last CT last year but had no idea how it had happened and it wasn't dangerous too her. The bruised and droopy face were down to her fall injuries and she is being sent back to the home this evening.

I spoke to the GP and she said a Respect Form is exactly the same as a DNR, just updated. She said the DNR along with the Advanced Care Plan meant that mum shouldn't have been moved to hospital, although maybe the paramedic insisted due to a head injury. For instance I know a suspected fracture is a reason to hospitalise because it can be incredibly painful.

I know the Head Nurse at the home isn't happy and is looking into Safeguarding which is nice to know because it's reassuring to know the home is seeing if policy was followed. I've also spoken with the Manager to ensure all nursing staff are aware of the Advanced Care Plan as this "should" have been shown to the paramedic.

Mum has/will be incredibly agitated in hospital and of course we weren't allowed down to sit in A&E. I don't know how she does it. She beats Covid and survives falls with bumps and bruises and is on blood thinners so that makes it even more surprising that she survives the bumps and bruises and yet she just won't let go, even though a fully mentally conscious mum would want to let go. It really plays with your mind. On the one hand I am glad that she is "physically" ok but on the other hand she could have slipped away this morning and her suffering would be over.

 

[Max68]

Hi all, just had to place some thought down on paper so to speak. It's been absolutely heart breaking with mum recently. No matter what anti depressents the GP tries mum is just continuously crying and sobbing and is so scared, confused, upset - pretty much ever single negative emotion possible and it's so cruel seeing this once strong independent lady like this.

Went to the Care Homes Garden Party this week and mum was the only resident crying and there is nothing you can do. We then went to see her yesterday and she admitted that she is starting to forget who we are,. She hates it at the home (although she would hate it anywhere), and she wants to go home. She looked at my sister and asked if her sister (who died 4 years ago from dementia) was suffering the same. Her eyes just looked so frightened and my sister just didn't know what to say. I just changed the subject as quick as possible. Then she kept asking me why I don't visit the house anymore, I mean what can you say?! When we leave she usually just shouts at us not to come back because we are leaving her there. She has in her mind that we are taking her home every time we visit. Yesterday though as we left she just sat there sobbing just watching us leave which was absolutely horrific. To see her broken face covered in tears and clearly frightened. I mean there are no words. The carer with her said that within minutes she forgets we were there, but does she? Thing is mum was "never" a crier, even when dad died she would have done her grieving privately. That's what makes it even harder because we have never seen her this way.

Why are they allowed to suffer like this? It's no life at all and it's desperately cruel and we feel just so helpless. I just want mum to go quietly in her sleep but why do they seem to battle on when even they don't want to be here anymore?!

 

[jennifer1967]

could you speak to her gp and maybe get a tablet to raise her mood a little and help her feel less frightened?

 

[Max68]

could you speak to her gp and maybe get a tablet to raise her mood a little and help her feel less frightened?

Thank you. Already tried it. Not sure what anti depressant she is on but they have even upped it, but nothing seems to be working.

 

[Melles Belles]

@Max68 Could your mum be in pain?

 

[Max68]

@Max68 Could your mum be in pain?

Thank you. Not physical pain no, we always ask and even if we lead with a question the answer is always no. She got nipped by something recently and said it itched so if she was in pain I think she would say so. She always seems fine with the carers as well, never flinches when any of them come over so I'm pretty sure nothing untoward is going on.

What she does have though is mental anguish. She says things like "my brain doesn't work", "I can't remember anything" and "I can't do anything anymore" so there is a realisation there that she isn't right, and that's just awful because what can you say?! She is obviously also very bored, which she states, but there again even if she has taken part in something enjoyable an hour or so before she would forget it. When I talk about her past being a good golfer or engineer on concorde she lights up a bit but soon goes down again.

Her sudden obsession with her sister is also a bit bizarre as they didn't really see eachother for years and weren't over close, although if her brain is living in a past decade that might explain it. A few weeks ago she asked how her sister was. I said because of covid she was unable to visit and mum got a bit upset. Two minutes later she asked if her sister was dead. I went quiet, not quite knowing what to say and mum said "I thought so because I haven't seen her", but seemed accepting. Five minutes later she asked again. Because she was ok with it a few minutes earlier I just nodded when she asked and she became inconsolabe and started sobbing. It's just so difficult because whatever answer works at one point won't work the next time.

 

[canary]

Im sorry your mum is in a loop over her sister. People with dementia forget things that have happened, but they remember the emotions. So your mum cannot remember what has happened to her sister, but remembers feeling that something terrible has happened, so she keeps asking.

I would be inclined not to tell her that she has died, even if she asks directly, because you dont know how she will respond. When mum used to ask how her parents were, I took advice from here and told her "oh just the same as ever" (which was sort of true). If she asked when they were coming to visit I would say soon, or next week, which consoled her and then it was forgotten about and there were no horrid emotions attached to the subject.

 

[Max68]

Im sorry your mum is in a loop over her sister. People with dementia forget things that have happened, but they remember the emotions. So your mum cannot remember what has happened to her sister, but remembers feeling that something terrible has happened, so she keeps asking.

I would be inclined not to tell her that she has died, even if she asks directly, because you dont know how she will respond. When mum used to ask how her parents were, I took advice from here and told her "oh just the same as ever" (which was sort of true). If she asked when they were coming to visit I would say soon, or next week, which consoled her and then it was forgotten about and there were no horrid emotions attached to the subject.

Thanks Canary, yes I usually go down that route, I was just quite taken aback when she asked if she had died and probably gave the wrong answer. It's very difficult.

 

[canary]

You cant be on the ball all the time @Max68 . You are right, it is very difficult and sometimes you trigger them off even with the best of intensions and experience.

 

[Max68]

You cant be on the ball all the time @Max68 . You are right, it is very difficult and sometimes you trigger them off even with the best of intensions and experience.

Indeed. Especially when the same answer can produce a totally different emotional response.,

 

[Max68]

Really strange experience with mum at today's visit. When we arrived we couldn't believe it. Mum was full of beans, smiling, laughing, joking and even did a little jig with her grandson. She was moving and walking really well and we haven't seen her so bright for ages. She was belting a balloon around with her grandson and still has a powerful backhand, of which she laughed when I reminded her that I'd felt that backhand on my backside over the years!! It was such a joy to see her so close to how she was prior to dementia.

Then she went to the loo with the aid of a wonderful carer, who is absolutely brilliant but came back a totally different person. Mum was tearful again, annoyed and frustrated and it was such a shock to see such a turnaround in minutes. I know she had medication that morning, so maybe it started wearing off but bar that it was so odd how even with dementia such a change can happen so quickly. It wouldn't have been the carer as she brought mum out at the start and she has a great rapport with mum, and I always gauge mum's reaction with carers to check if she flinches or looks scared and have never seen that. So why just after going to the loo? I know each week is different but has anyone else see such a change in just one visit?

 

[Grannie G]

It`s impossible to understand @Max68 . Whether it's medication, a change of scene or something else which triggers such a change in behaviour is a mystery.

I hope it will be some consolation, now you`ve seen your mum in a happy place, to know she may not be weeping and upset all the time.

 

[Max68]

Thank you Grannie G. My word it was incredible for just a few minutes, it was like mum again and I'm grateful for those few moments.

 

[lemonbalm]

Hello @Max68

My mum would often, not always, get extremely agitated whilst being helped in the loo. I think, no matter how good and gentle the carers are, it can be very degrading and embarrassing, particularly if a change of pad or clothes is required, or there is cleaning up to do afterwards.

Mum would not remember that she needed help beforehand and I think this was a stark reminder for her.

These things are soon forgotten and it is very good to see that your mum is having happy times. Try to focus on those, although i know it is easier said than done.

 

[Max68]

Hi all hope you are all well. Been a nightmare for us all this pandemic and our loved ones. Mums home shut down again in December and only opened up again a few weeks ago. Since we have been able to visit again the crying has stopped. Unfortunately it's been replaced by mum no longer recognising us. She seems pleased to see us but I'm sure she thinks we are just some random people visiting. The home are trying to give her one of these food drinks because she doesn't eat much and we notice she now sleeps a lot, and falls asleep in the chair when we are there. She has quite a few falls, needs help walking with her Walker and her speech has deteriorated, all in a couple of months. Obviously it's a relief she no longer cries and is upset but it's hard that she doesn't recognise us, although that does make it easier to leave at end of a visit.

Not sure if her sleepiness is down to not eating or all this is a major deterioration. Does anyone know if lack of appetite and sleeping a lot are towards the later stages or just another drop in level?

 

[canary]

Not sure if her sleepiness is down to not eating or all this is a major deterioration. Does anyone know if lack of appetite and sleeping a lot are towards the later stages or just another drop in level?

Hi @Max68 . It does sound like this is another step down. Loss of appetite and sleeping more is indeed part of the latter stages of dementia, but this can go on for some time.
I am glad she is happier, although this is obviously bittersweet for you.
xxx

 

[Grannie G]

Hello @Max68

It's been 5 months since your last post and with covid in the mix it's not surprising there's been a drop in your mothers health.

It``s sad for you but at least she is no longer upset and you do not leave her feeling distressed.

You will never know whether or not she really recognises you but at least you are greeted with a smile and she is pleased to see you.

 

[Jaded'n'faded]

My mum was the same as things progressed. Even the carers told me, 'We worry when they stop being feisty and difficult...'!

Poor mobility, paucity of speech, lots of sleeping, poor appetite - these are all signs of progression towards the later stages.

I'm really sorry. Though as you said, it can be 'swings and roundabouts'. My mother was far easier to visit and deal with as things progressed though obviously the progression was hard for me to witness. But although mum no longer understood our relationship during her final year, she recognised me as 'someone she knew' right till my last visit. (When she took another downturn. She died peacefully a few days later.)

 

[Happy Hampton]

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.

I’m sorry you are going through this. I must be in the crying stage because I cry for no reason. I cry over telly commercials. I see how this affects my husband and 15 year old daughter. She shouldn’t be going through this at that age. I’m aware I’m changing and it’s so frustrating. If I have a meltdown , immediately I say Oh my gosh! I’m behaving like a crazy person with a brain disease. I know, but I can’t stop. I do have a good support group with my family

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.

Uncontrollable Sobbing is a big part of the disease. I’m going through that stage now. I wish I could tell you it will get better, but once that stage is over, it’ll be something else. The only thing that calms me is my husband. He holds me and let’s me cry it out.
I'm so sorry you are going through this. If there was anything I could do to hanger your situation, I’d do it. ? Sorry, didn’t mean to double post. Terminal brain disease stinks.