Mum says she wants to die and will be it be over soon

[SarahL]

Does anyone have experience of their loved one with dementia talking about dying and asking when it (life) will be over? My poor Mum is day 4 into new medication (sodium valproate) to help with regulating her moods (she has mental health issues as well as Alzheimer's) and although over the years she's told me on and off she has nothing to live for, today she kept crying and asking to die. So sad. I wonder if it could be the meds to a degree or just this awful disease. She is also asking for her own Mum a lot, it's so heartbreaking. I feel so terrible that she had to be sectioned last November and wonder if she'd stayed in her own home if things wouldn't be so bad now. She seems so much worse since she went into the care home in December. I just can't seem to get any inner peace since this disease took over mine and Mum's life and although she's safe now, I still wonder if she'd have been happy in her own home with full time care, but when she was in her own home she wouldn't have anyone in, it's just a catch 22 that is going over and over in my head. I have to accept she's not going to get any better but to hear her crying and saying she wants to die is awful. Does anyone know if it's a stage of the disease? x

 

[Tin]

Tough times Sarah, I don't know the answer to your question, but understand your self doubt and worry. My mum who is still living with me, has had a few lows and she has asked me why she is still alive? just heart breaking and I start to have doubts about whether living with me is good for her, should I have left her in her own little home or should I have gone right to care home decision and then just as I am doubting myself she has a good day and tells me how much she loves living with me. Talk to the staff at the care home, maybe they will be able to give you a better picture of your mum's day to day when you are not there.

 

[Grannie G]

Hello Sarah

Sadly this is a common symptom of the disease and drugs can help but often fail to be 100% successful.

Give the drug at least a month to take effect and if your mother is still as distressed go back to the doctor for advice.

I doubt there is anyone on TP who hasn`t doubted the wisdom of their decisions at some time or other. The trouble is, as you do realise, it was the fact your mum was so difficult to care for which influenced the decision for residential care for her. Taking her home would just mean you would be back to square one.

I do hope the drug helps in time but if not please do see her doctor.

 

[Amy in the US]

Hi, Sarah, I've been out of town and/or busy the past few weeks so haven't been around much. I have just seen your post and wanted to respond. I'm so very sorry that this blasted disease, as well as your complicated situation, is making life so very difficult for you right now. Of course it's perfectly awful to see her so upset and hear her talking about wanting to be dead. I am not an expert and can't speak to the effects of the medications but I do wonder if there could be some awful confluence of the drugs, the dementia, and your Mum's underlying mental illness.

I know it's just awful and I do know about that endless Catch 22 loop that plays in your head. I have those times when I wonder, too, and never mind that my mother was supposedly "happy" at home, I also know she wasn't safe, was isolated, couldn't look after herself or her finances, and was a danger to herself and others. Like your mother, mine would also never have allowed any help and wouldn't even discuss it.

It's so awful and I'm so sorry. I do wonder if talking to the staff might give you any insight or information that could be helpful?

Please hang in there!!

 

[Gknee]

Accidental overdose

Hi Sarah L,

I'm writing this with much empathy for your situation - my dear old mum (87 and with Alz and Vas D) is in hospital having accidentally overdosed herself on her meds. She lives at home and has carers call twice a day to administer them as she was unable to do this independently. Yesterday a carer called me to say that two day's worth of meds were missing between the evening call and the morning one. I have kept them in an 'anonymous' looking bag, out of her reach and had no idea she even knew where they were, but had to be mindful that the carers themselves also need to be able to reach them fairly easily.

Anyway, she has found them and is now in hospital being treated for paracetamol poisoning. But she recently asked for painkillers as she sometimes has headaches. I explained that in her regular medication there were painkillers, and she also wears a morphine patch and I couldn't let her have access to any more. Her unusually lucid reply to this was that she didn't intend to 'do herself in - if that was what I thought' .

In the last 7 days she has also had a mild heart attack and burned soup on the stove. She wants desperately to stay at home but I'm running out of ways to keep her safe. She is self-funding, and rapidly running out of money to provide the level of care she needs. I do all her shopping, admin, finances, hospital appointments etc and visit every day after work. I think what I want to say is that I'm now beating myself up for supporting her decision to be at home. I'm certain this wouldn't have happened if she were in a care home. So please don't question your decision to have your mum cared for in the way she needed at the time. We can never know the outcome of making the 'other' decision.

Please let us know how she is?

Gknee

 

[SarahL]

Hi Sarah L,

I'm writing this with much empathy for your situation - my dear old mum (87 and with Alz and Vas D) is in hospital having accidentally overdosed herself on her meds. She lives at home and has carers call twice a day to administer them as she was unable to do this independently. Yesterday a carer called me to say that two day's worth of meds were missing between the evening call and the morning one. I have kept them in an 'anonymous' looking bag, out of her reach and had no idea she even knew where they were, but had to be mindful that the carers themselves also need to be able to reach them fairly easily.

Anyway, she has found them and is now in hospital being treated for paracetamol poisoning. But she recently asked for painkillers as she sometimes has headaches. I explained that in her regular medication there were painkillers, and she also wears a morphine patch and I couldn't let her have access to any more. Her unusually lucid reply to this was that she didn't intend to 'do herself in - if that was what I thought' .

In the last 7 days she has also had a mild heart attack and burned soup on the stove. She wants desperately to stay at home but I'm running out of ways to keep her safe. She is self-funding, and rapidly running out of money to provide the level of care she needs. I do all her shopping, admin, finances, hospital appointments etc and visit every day after work. I think what I want to say is that I'm now beating myself up for supporting her decision to be at home. I'm certain this wouldn't have happened if she were in a care home. So please don't question your decision to have your mum cared for in the way she needed at the time. We can never know the outcome of making the 'other' decision.

Please let us know how she is?

Gknee

Thank you Gknee that makes me see the two sides of this situation more clearly. If Mum had remained in her own home ie the 'other decision', I would probably be in a worse state myself worrying about her and carrying the full responsibility and would she be any happier? The answer is probably not as the disease is taking away her skills to function in all senses and her approach to her own happiness has always been beset with depression even prior to the disease, so I could just not provide for her. I recognise I am a 'rescuer' type of person and I really do have to let go. It's just seeing the emotional sadness in her and the knowledge I was involved in taking away her liberty that hurts. This illness makes for a horrible decline and she did not have an overly happy life in the first place, having made bad decisions through mental health issues but I cannot undo the sad history.

Reading about your Mum it must be so worrying for you with her taking too many tablets and knowing she'd found the bag you'd hidden them in. If she is anything like my Mum, she used to go through her house and belongings continuously as she never went out and was so isolated and would come across all sorts of things. I think she gave away a lot of things to neighbours as I have discovered things missing too. I hope your Mum is recovering after the mild heart attack. It is such a difficult time and I really feel for you, as I did all the things you are doing and I know how hard it is and how much time it takes up, let alone all the worry and frustrations. While your Mum is in hospital is it possible to get another assessment done on her? I know your Mum hasn't been sectioned but just a point to raise regarding care costs - when my Mum got sectioned she went into hospital under Section 2 (of the MHA) but I found out that if she'd gone in under a Section 3 this would have had a bearing on getting support with care fees. I was just thinking if your Mum had another assessment, depending on the outcome, there may be a possibility of help.

Re Mum I will go in again today and next Monday there is going to be a review meeting in the care home with the mental health team so I hope there will be some more support/resolution for Mum's state of mind.

Thanks again.

 

[beverrino]

I am sorry to hear about your Mum Gknee. Mine too is still living in her own home and gets very depressed sometimes. But my response is to the medication issue.
I purchased an automatic pill dispenser for my Mum It is from tabtime and called medelert (its seems I am not allowed to post links) - (bought mine from Amazon) and its excellent!. I control it and fill it up so all her medication is with me. Its lockable and at first she protested about it - and we had a few issues where she was removing the batteries. She actually broke the first one - but I have now replaced it and she has settled down to it - it works wonderfully.

 

[Spiro]

If the care home GP prescribed the sodium valproate, I would suggest speaking to them regarding your concerns. They might consider altering the dose or changing to another medication.

 

[Gknee]

Thank you Sarah and Beverrino

Thank you both for your kind responses. I tried mum with a medibox earlier in this process and she didn't have the dexterity to handle it. SS have advised they won't let her home without a lockable safe for her meds -which makes a lot of sense as only the carers would have access. Now all I have to do is find a 'mum-proof' place to hide the safe code number.

Since she has been in hospital her mental decline has been rapid. She has never fallen at home but in the three days in hospital she has fallen twice and bruised her face really badly. She now thinks the staff there hate her. Last night she grabbed my hands and begged me to bring her home. There is a shortage of carers in mum's area - hardly surprising with their low pay/exploitative 'contracts' - and SS now won't let her home without an extra carer visit at night to be sure she has swallowed the correct meds.

I'm having trouble coping with her distress and the guilt of knowing I could just move in with her but then SS would have no incentive to help with her care and I would end up losing my job ( supply teacher so I am unpaid when I don't work - and what is worse for a school than an unreliable supply teacher?)

There is one further problem - mum has a very old ( 14) dog as a pet. The dog is ill - struggles to breathe at times but mum doesn't notice. I feel it is time to remove the dog from the equation as she can no longer look after her properly and it is yet another job I have to wrap around all the existing care I give. But I'm beating myself up about this too as I know mum will be distraught.

Any advice most gratefully appreciated. And SarahL - I wish I had chosen the 'other decision' before all this happened!

 

[Pickles53]

I'm having trouble coping with her distress and the guilt of knowing I could just move in with her but then SS would have no incentive to help with her care and I would end up losing my job ( supply teacher so I am unpaid when I don't work - and what is worse for a school than an unreliable supply teacher?)
!

I don't think your mum would want you to compromise your own future by losing your job, so please don't feel guilty. You are doing everything you can, and more than many. Why is it that carers can always find reasons to beat themselves up?

 

[Lancashirelady]

Thank you both for your kind responses. I tried mum with a medibox earlier in this process and she didn't have the dexterity to handle it. SS have advised they won't let her home without a lockable safe for her meds -which makes a lot of sense as only the carers would have access. Now all I have to do is find a 'mum-proof' place to hide the safe code number.

Since she has been in hospital her mental decline has been rapid. She has never fallen at home but in the three days in hospital she has fallen twice and bruised her face really badly. She now thinks the staff there hate her. Last night she grabbed my hands and begged me to bring her home. There is a shortage of carers in mum's area - hardly surprising with their low pay/exploitative 'contracts' - and SS now won't let her home without an extra carer visit at night to be sure she has swallowed the correct meds.

I'm having trouble coping with her distress and the guilt of knowing I could just move in with her but then SS would have no incentive to help with her care and I would end up losing my job ( supply teacher so I am unpaid when I don't work - and what is worse for a school than an unreliable supply teacher?)

There is one further problem - mum has a very old ( 14) dog as a pet. The dog is ill - struggles to breathe at times but mum doesn't notice. I feel it is time to remove the dog from the equation as she can no longer look after her properly and it is yet another job I have to wrap around all the existing care I give. But I'm beating myself up about this too as I know mum will be distraught.

Any advice most gratefully appreciated. And SarahL - I wish I had chosen the 'other decision' before all this happened!

Whatever you do PLEASE don't give up your job. You can't sacrifice your own life to look after your Mum full time - and SS would be only too happy to let you. My Mum has gone on for ages about how she has lived quite long enough and just wishes she could die. It's upsetting to hear it but I can understand her distress. She knows she can't remember anything, her eyesight is very poor and she can't see to read or watch TV properly - not that she can concentrate - and she can't walk very far any more. She is tired of life and I think no matter what anyone did she would not be happy.

On the subject of the meds - Mum was terrible for taking random tablets so we bought a safe with a normal lock from Argos. The key is in a keysafe outside, the carers have the code and they give her the meds.

Hope your Mum is a bit better today x

 

[Quilty]

My Mum too had mental health problems for years and the alzheimers made them worse. She is now in a care home. I found much to my surprise that she was much happier in the care home as she has people there all the time. I think she associated her own home with all the things she lost - my dad, her independence and ability to do things. In the care home she sees she is much healthier than many others and is overall very happy. My mum was always very good with strangers and only showed her depression to the family.

Your Mum might actually be better in care. Have you thought of respite to give yourself a break and dip you toe in the water.

I have lived with the all consuming worry of over medication and erratic suicidal behaviour. You need to plan for a crisis and try to get that plan inplace before the crisis if you can. Social services and your doctor should be able to help. Tell them your Mum is at risk. That she is not safe. My sister is a trained foster parent. Unsafe adult is a phrase they wont ignore.

Bets of luck. Keep hold of your own life as you need it. Lots of love to you Quilty