Guilt / Failure / Dilema

[MagD]

Hi everyone. This is my first post although I have been reading and gaining knowledge from you all over the few months. Thank you! I have the utmost respect for you all. I wish I was doing as good a job as everyone, I feel I am not coping well at all. My mum has mixed dementia and has had symptoms of some sort since before Feb 2012 when my dad passed away. I think he kept some things from me. I am the only surviving child so my husband and I look after her. She does not live with us, we both work, she still in her own home, although I don't know how much longer we can sustain this. She has home care 4 times a day, around half an hour per visit for medication and meals. She also attends a day centre two or three times a week. I would say that she is in the middle stages of dementia. She has hallucinations in a daily basis, not frightening her, but are of people she thinks she needs to make dinner for. Thankfully the cooker is disconnected and she would not remember how to use the microwave but so much food is wasted with her opening things and leaving them out for "them". The biggest problem we have at the moment is her constantly wanting to go home. We used to be able to talk her round or distract her but not any more. We recently tried taking her out in the car for a run round the block and that worked initially. Tonight was a nightmare. She left the house yet again and yet again one of her neighbours brought her back to her house (we arrived just after this having been alerted by door contacts going off) although it was not "her" house. Had a trip out in the car, then a walk around the neighbouring streets, then another trip in the car before she settled. This is becoming every second night or so now and it is draining. She was very hurtful tonight, saying I was trying to make a corpse out of her, that I was making a spectacle of her and didn't respect her,etc etc. We have always been very close and whilst I know this is the dementia talking it is very hard. I cry at the crop of a hat, every day over something, usually more than once. I feel so guilty, a normal response I know, and I know I shouldn't but this is the hardest thing I've ever had to cope with. I know my "old" mum would hate for me to feel like this, she has always said she would want to stay at home as long as possible, I just don't know how much longer I can do this. It makes you feel such a failure that you can't make everything all right but when is the right time to consider a CH? I think she would be quite resistant to it.

 

[Mannie]

My thought is to ask for advice from her GP. best way is to make a diary of your observations for a week or so while you await the apointment. It sounds urgent. You mum's needs have changed, she definitely needs to be reassessed . The diary will be the type of evidence that the GP will base their judgement on. If she has a CPN , call them on an urgent basis. If she does not have a CPN, then Her GP will first check for other causes or maybe her meds need to be adjusted , if not then the GP will ask for her needs to be reassessed. They will assess whether she has the capacity to refuse an additional level of care.

It is possible to have a live in carer, instead of a move to residential care, although financial aspects may affect that decision.

 

[jorgieporgie]

Morning Maggie D,
Welcome to TP and look forward to getting to know you. My Mum is exactly the same Hallucinating which started nice ones but the last few months turned frightening. I have her living with me and look after her 24/7 so I am able to monitor her changes in the dementia rollercoaster. I would advise you to start getting everything in place CPN, GP and SS. as I have found out the hard way the deterioration is rapid at times. Ask your GP for some meds to calm her down, our Gp gave Mum some Larazapan just half a tablet twice a day and it has made her sleep through the night now and hallucination are not frightening anymore. There is help out there but keep pestering. Good Luck xx

 

[Chemmy]

Hello and welcome to TP

If you're asking the question, then it's time to start looking, imo. I'm a great believer in having Plan B ready prepared, even if you don't act on it immediately, as that puts you back in control. Having to make such a decision is difficult enough, but being forced into doing it in a crisis situation is far harder.

So maybe make a start by visiting some of the local care homes to get a feel for what's out there. Read the CQC reports and check whether they take dementia residents, but nothing beats a personal visit, including meeting the manager.

My mum was a wanderer and it was one of the main reasons I opted for the CH in the end as I felt she needed 24/7 supervision. It's all about risk assessment - if she goes out during the day but finds her way home, then that's fine. If she goes out in the evenings which are now relatively mild and finds her way home, I'd say that was probably fine too. But if she's starting to get lost, than that's a different matter. You have to weigh up giving her a last chance of 'independence' against her safety. It's a difficult call.

My mum was spotted wandering around the town centre in the evening in the dark in December. That was my line in the sand.

 

[LadyA]

Chemmy is right - if you are asking the question, then it's time to be thinking about putting things in place, in case you need a Plan B in a hurry. And I don't know why you called your thread Guilt/Failure/Dilemma! - you have nothing to feel guilty for, (whoever's got the Guilt Monster stick at the moment, please pass it to MagD!) you have not failed in any way - yes, I will grant you, you have a bit of a dilemma!

If your mum is going out and can find her way back home - well and good. But, as you say, she is not recognising home - that's a different kettle of fish, isn't it? If she has a walk around, she may go home again. But she may not. You could put a tracker in her handbag - assuming she always takes her handbag? But what if she doesn't?

Definitely, your mum needs reassessing. You have obviously done everything you can up to now - with the cooker being disconnected. Her needs have changed, and will go on changing.

 

[annierich]

Hi everyone. This is my first post although I have been reading and gaining knowledge from you all over the few months. Thank you! I have the utmost respect for you all. I wish I was doing as good a job as everyone, I feel I am not coping well at all. My mum has mixed dementia and has had symptoms of some sort since before Feb 2012 when my dad passed away. I think he kept some things from me. I am the only surviving child so my husband and I look after her. She does not live with us, we both work, she still in her own home, although I don't know how much longer we can sustain this. She has home care 4 times a day, around half an hour per visit for medication and meals. She also attends a day centre two or three times a week. I would say that she is in the middle stages of dementia. She has hallucinations in a daily basis, not frightening her, but are of people she thinks she needs to make dinner for. Thankfully the cooker is disconnected and she would not remember how to use the microwave but so much food is wasted with her opening things and leaving them out for "them". The biggest problem we have at the moment is her constantly wanting to go home. We used to be able to talk her round or distract her but not any more. We recently tried taking her out in the car for a run round the block and that worked initially. Tonight was a nightmare. She left the house yet again and yet again one of her neighbours brought her back to her house (we arrived just after this having been alerted by door contacts going off) although it was not "her" house. Had a trip out in the car, then a walk around the neighbouring streets, then another trip in the car before she settled. This is becoming every second night or so now and it is draining. She was very hurtful tonight, saying I was trying to make a corpse out of her, that I was making a spectacle of her and didn't respect her,etc etc. We have always been very close and whilst I know this is the dementia talking it is very hard. I cry at the crop of a hat, every day over something, usually more than once. I feel so guilty, a normal response I know, and I know I shouldn't but this is the hardest thing I've ever had to cope with. I know my "old" mum would hate for me to feel like this, she has always said she would want to stay at home as long as possible, I just don't know how much longer I can do this. It makes you feel such a failure that you can't make everything all right but when is the right time to consider a CH? I think she would be quite resistant to it.

When you said 'she has always said that she wants to stay at home as long as possible' I agree with the others that you have probably come to the point now when 'as long as possible' has now come to an end. Don't you think she needs to be somewhere where she is safe 24/7? Don't feel guilty about choosing a Care home. If I were you I'd feel guilty if something happened to her if she remained at home.

 

[MagD]

Thank you!

Thank you all so much for your replies and advice. I contacted the Psychiatric nurse at the day centre my mum attends today (it is they who case manage my mum through social work) who spoke to the consultant about the changes in mum's behaviour. He is going to review her medical notes and discuss with her again tomorrow to see if there are any adjustments that can be made to her medication. She is on memantine and aripiprazole (among others) at the moment and although there are other options there are risks to her due to a heart problem. The nurse is going to pick my mum up from her house tomorrow also to see if there is anything obvious in the house that triggers this belief that she has two houses with the same address but I have already removed family photographs etc on their previous advice. Mannie - I think that it's a good idea to keep a diary as I forget from one week to the next what has happened and when, you start to worry about yourself, however I know it is just the stress of it. Mum has already been assessed as having incapacity and thankfully we put POA in place when my dad passed away so at least that is one hurdle I don't have to worry about. Jorgieporgie - thanks for your warm welcome. I did ask the nurse about giving her something to calm her down in these circumstances but they are not keen to do this as she lives alone. My mum has had hallucinations now for at least 4 years and she was diagnosed with Charles Bonnet Syndrome before being diagnosed with dementia. They say that she still also has this and that the hallucinations could be caused by both conditions. As I said though she is very rarely frightened, mostly worried I would say, as she often is worried about the "boys" being there, them not eating and how they are going to get home. I think it is my two young grandsons who are on her mind but this sometimes changes to it being my son (a younger version) or her brother (who is younger and who she brought up as a child). Chemmie - I definitely will start to have a look around local care homes and read their inspections reports. You are right, it is better to be prepared, I am really just putting it off but I need to face it eventually. And I need her to be safe. LadyA - I feel so guilty that I cannot care for my mum 24/7, I so admire anyone who can do this for their loved ones, I just don't think I could cope with that. I also feel guilty that I can't make everything ok for her. I know that sounds a stupid statement to make but that's how I feel. I feel like she is my child now and I am responsible for her. We do have things in place if she goes wandering, GPS device, door contacts which dial through to a call centre, etc. To be honest I don't think she would get that far due to her mobility but I am scared she will fall, as she has done this in the past but been lucky enough not to do any serious damage. Annierich - I hear what you are saying. I will prepare. I can't thank you all enough for your support. It is sometimes a lonely place to be caring for someone with dementia.

 

[LadyA]

We all, for some reason, have been through the guilt. The guilt is a false guilt though. My husband used always to insist that he was NEVER to be "warehoused in a nursing home, doped up on drugs!" He always insisted that there was nothing wrong with him - it was just me, making up lies about him so I could get him locked up and go off and live a nice life and do whatever I wanted. He used to try and make me promise never to put him in a nursing home. I never promised. I promised I would take care of him as long as was possible, and I did. When it became dangerous for both our sakes for him to remain at home, he went to full time care, where he thrived and blossomed. He also ended up on quite a whack of medication, which improved his quality of life and state of mind greatly.
And still, I felt guilty - because he was so much better in the nursing home. I shouldn't have - one person, alone, cannot do the job of a fully staffed, fully equipped nursing home. But yet we feel we should be able to make it all better. Magical Thinking, my friend calls it.

 

[JohnBG]

You are doing a great job.

I sometimes base my assessment on what I might offer as a remedy to others, that in reality is what should be achieved, a safety issue. When our time comes I would not expect my own mother to understand, that is why her capacity is diminished even trying to explain confuses her. I express that every decision will be in her best interest even though an explanation or comprehension itself are challenging.

We do not expect to be parenting the very person who may have looked after us, so good luck on your journey take care.

John.

 

[1mindy]

We all, for some reason, have been through the guilt. The guilt is a false guilt though. My husband used always to insist that he was NEVER to be "warehoused in a nursing home, doped up on drugs!" He always insisted that there was nothing wrong with him - it was just me, making up lies about him so I could get him locked up and go off and live a nice life and do whatever I wanted. He used to try and make me promise never to put him in a nursing home. I never promised. I promised I would take care of him as long as was possible, and I did. When it became dangerous for both our sakes for him to remain at home, he went to full time care, where he thrived and blossomed. He also ended up on quite a whack of medication, which improved his quality of life and state of mind greatly.
And still, I felt guilty - because he was so much better in the nursing home. I shouldn't have - one person, alone, cannot do the job of a fully staffed, fully equipped nursing home. But yet we feel we should be able to make it all better. Magical Thinking, my friend calls it.

Yes ,this is so true. I'm sure most people would say I dont want to end up in a care home. But my husband is thriving. I now feel guilty I kept him at home as long as I did. Consider a care home now.

 

[KingB]

My parents both went into care home - I was very lucky because they chose that option themselves when things became untenable. Both settled well after a time and in both cases their lives dramatically improved in that supported environment. I know that for many people that decision is taken for them - and they still settle in over time.

Mum and dad were very private people and I would never expected them to do well in a communal setting (especially my very difficult dad !). But when it came to the point where that was the least bad option then they both made the best of it. A day with plenty of cheery carers and some organised activities to pass the time is way better than a day sat at home largely alone and just staring out the window (that was how dad was before he went into care).

I am in awe of people who are able to care for their loved ones themselves - and do sometimes feel guilty BUT I know that what I do for mum (and used to do for dad) is to lift the mood and be lively and funny as was always my family role - which I would never be able to do for them other than in relatively short bursts. We are lucky to have found a wonderful nursing home and I absolutely trust them to be looking after mum the best they can, and they took care of dad right through to the end.

So my advice is to look at the care home option and be aware that there are some wonderful places around where your mum's life would be as good as it can be at this stage. Unfortunately there is no fix for your mum's dementia - but with good support she can have a good quality of life and be safe. For some that good support is best found in care home - so it is worth viewing it as a positive option rather than a last resort failure.

 

[Alicenutter]

Hello and welcome to TP

If you're asking the question, then it's time to start looking, imo. I'm a great believer in having Plan B ready prepared, even if you don't act on it immediately, as that puts you back in control. Having to make such a decision is difficult enough, but being forced into doing it in a crisis situation is far harder.

So maybe make a start by visiting some of the local care homes to get a feel for what's out there. Read the CQC reports and check whether they take dementia residents, but nothing beats a personal visit, including meeting the manager.

My mum was a wanderer and it was one of the main reasons I opted for the CH in the end as I felt she needed 24/7 supervision. It's all about risk assessment - if she goes out during the day but finds her way home, then that's fine. If she goes out in the evenings which are now relatively mild and finds her way home, I'd say that was probably fine too. But if she's starting to get lost, than that's a different matter. You have to weigh up giving her a last chance of 'independence' against her safety. It's a difficult call.

My mum was spotted wandering around the town centre in the evening in the dark in December. That was my line in the sand.

Sent from my iPhone using Talking Point