Have we handled it wrong?

[Number3daughter]

We think we may have handled Mums Alzeimers wrong.
Because, at the beginning she got distressed and cried if she didn't get her own way we gave in to her and did whatever she wanted e.g one of us sleeps with her every night because we found her crying on the landing in the middle of the night, she didn't want to be alone.
Has anyone had this experience? And if so, can we change now? It's driving us mad, someone has to be with her all the time, she won't even sit in a room by herself watching telly, someone has to be with her.

 

[SWMBO1950]

Hi Number3daughter

I am sorry to read about your Mum.

I don't think there is a right or wrong way, as each persons symptoms/needs are different. If she is truely distressed I dont know what else you could have done as I am sure you would not want her to be upset all the time.

I personally have no experience of this type of behaviour, but I am sure someone on the forum will have and will be able to offer good advice . I just did not want to leave your post unanswered for too long.

Best Wishes

 

[Dunkery]

We think we may have handled Mums Alzeimers wrong.
Because, at the beginning she got distressed and cried if she didn't get her own way we gave in to her and did whatever she wanted e.g one of us sleeps with her every night because we found her crying on the landing in the middle of the night, she didn't want to be alone.
Has anyone had this experience? And if so, can we change now? It's driving us mad, someone has to be with her all the time, she won't even sit in a room by herself watching telly, someone has to be with her.

I'm struggling with exactly the same problem as you although my mum has dementia. She wants me to sit with her constantly when she is awake and when I am trying to get a meal she sits on a chair in the kitchen but recently that is not enough and she pleads with me to hold her hand when I am getting something out of the oven! I have tried to be reassuring but firm by saying i will hold her hand when I have finished but she is not comforted by this and then I feel awful. I do not have any answers really. A CPN did say to me that by giving in to her need for company constantly I was "feeding" her anxiety and that I should say "I will come and sit with you in 10 minutes" but am not sure that really works now as well as it used to. I hope others have more useful advice. You have my sympathy-it is very stressful! x

 

[Grannie G]

I also don`t think there`s a right or wrong. You did your best at the time with the situation you were presented with and no one could have told you how it would turn out.

The experiences I had with my mother didn`t hold much water with my husband because they were both so different.

So please don`t blame yourself. You only acted that way because you thought your mum was frightened. Anyone with a heart would have done the same.

You might be able to change the conditioning by leaving your mum alone for a minute or two, `while you make a cup of tea` and increase her time alone gradually.

 

[MReader]

My husband needs to be with me all the time - even if I am in the toilet, he stands outside waiting for me. He also needs to hold onto me - you are right , it is difficult & dangerous when I am cooking etc.
He will not go to bed without me being there, even if I am in the next room.
This has been going on now for nearly 4 years and it does not get any easier - it seems to make him worse when I try to have 5 minutes by myself as his 'separation anxiety' ratchets up a notch.
He now goes to day care twice a week so I get a break - he was very unhappy at first but seems to have settled now as he is familiar with the place & people
Maybe your mum is not sure where she is and this is why she is distressed - my husband often wakes up not knowing where he is and gets frightened.
Have you tried giving her a soft cuddly toy for company?
No other advice, really - but lots of sympathy

 

[CeliaW]

How wearing for you - I haven't had quite the same but when Mum was more confidently mobile she followed people everywhere - including to the loo. The only thing we found helped was to give her something to do when we needed to concentrate on something. It ranged from folding clothes that had been washed to sorting papers or peeling spuds.

Would some kind of simultaneous activity work?

Hope you get some form of solution - has the GP been approached about any medication to specifically deal with her anxiety?

Good luck and take care
xx

 

[FifiMo]

I don't think you handled things wrong as you did what was necessary to deal with your mum's distress. In my experience it would be difficult for someone with dementia to be able to be consistently manipulative over a period of time and what is more likely is that she is experiencing things due to her dementia that we might find hard to understand. Most of us consider sleep to be natural but in dementia the night time can become the scourge of the disease. Sundowning doesn't help and then you have the fear of not knowing where you are. As the memory diminishes then if you have spent all day in surroundings that you feel familiar with you may not recognise other areas of the house by bedtime. You may waken up and find yourself in darkness and not know where you are. Of course you will feel reassured if there is someone there with you. As the dementia progresses, these anxieties are not limited to night time. Less and less things make sense. People around you are not able to appease you anymore as you cannot follow their logic any longer. Reassurance is needed from others being around. Someone there to make decisions, follow the routine and keep them company. What then becomes important is familiarity and routine. Change is not something the dementia sufferer is able to cope with easily.

Lack of sleep and the demands put on carers to meet the person's needs is often the straw that breaks the camel's back. You have to look outward to find what is needed to meet the oerson's care needs. Unfortunately the amount of assistance that is needed to cover this is not available in the home, firstly because you don't tend to get night time carers unless you can afford to pay a hefty premium for them. This then leaves a care home as an option. They can meet needs such as these because not one person has to do all the caring 24/7. They have night staff to give reassurance and company if you are unable to sleep. There are people around during the day to provide company. Unfortunately this can become the ideal option all round.

The only other suggestion that I have is to see if doll therapy might work. Find a nice baby doll and introduce her to the baby by holding it and sparking her curiosity. Then ask her if she would like to hold the baby. After a while ask her if she could do you a favour and watch the baby whilst you go make a cup of tea. You may find by having responsibility for watching the baby she has company so is not too bothered if you leave for a while. With a bit of luck, she may turf you out of her bed in favour of the baby sleeping next to her. Just make sure it is a vinyl doll you get because they often get messy when they are fed. A blanket to wrap the baby in would be good too. You don't have to pay a lot of money out. You can find them in charity shops for just a few £ plus changes of clothes and baby blankets too.

Fiona

 

[Dunkery]

I don't think you handled things wrong as you did what was necessary to deal with your mum's distress. In my experience it would be difficult for someone with dementia to be able to be consistently manipulative over a period of time and what is more likely is that she is experiencing things due to her dementia that we might find hard to understand. Most of us consider sleep to be natural but in dementia the night time can become the scourge of the disease. Sundowning doesn't help and then you have the fear of not knowing where you are. As the memory diminishes then if you have spent all day in surroundings that you feel familiar with you may not recognise other areas of the house by bedtime. You may waken up and find yourself in darkness and not know where you are. Of course you will feel reassured if there is someone there with you. As the dementia progresses, these anxieties are not limited to night time. Less and less things make sense. People around you are not able to appease you anymore as you cannot follow their logic any longer. Reassurance is needed from others being around. Someone there to make decisions, follow the routine and keep them company. What then becomes important is familiarity and routine. Change is not something the dementia sufferer is able to cope with easily.

Lack of sleep and the demands put on carers to meet the person's needs is often the straw that breaks the camel's back. You have to look outward to find what is needed to meet the oerson's care needs. Unfortunately the amount of assistance that is needed to cover this is not available in the home, firstly because you don't tend to get night time carers unless you can afford to pay a hefty premium for them. This then leaves a care home as an option. They can meet needs such as these because not one person has to do all the caring 24/7. They have night staff to give reassurance and company if you are unable to sleep. There are people around during the day to provide company. Unfortunately this can become the ideal option all round.

The only other suggestion that I have is to see if doll therapy might work. Find a nice baby doll and introduce her to the baby by holding it and sparking her curiosity. Then ask her if she would like to hold the baby. After a while ask her if she could do you a favour and watch the baby whilst you go make a cup of tea. You may find by having responsibility for watching the baby she has company so is not too bothered if you leave for a while. With a bit of luck, she may turf you out of her bed in favour of the baby sleeping next to her. Just make sure it is a vinyl doll you get because they often get messy when they are fed. A blanket to wrap the baby in would be good too. You don't have to pay a lot of money out. You can find them in charity shops for just a few £ plus changes of clothes and baby blankets too.

Fiona

Thank you for your useful insights and advice. I will try the doll idea. Mum likes to cuddle our dog, (she is on mum's lap as I type, and they are both asleep!) but she does not always stay put.

 

[lin1]

As others have already said you did your best and their is no right or wrong way

At various times my mum hated to be alone even for a few minutes,but over time this did change and I was able to leave mum for a while.

I believe its because their is understanding that their is something very wrong and at least with my mum she felt unsafe by herself, if dad or i were with her all was right with her world and felt safe

What might help, though their are no guarantees is, Doll therapy
literally by accident , dad found a soft teddy helped my mum, she adored her litlun as we named it, she kissed, cuddled and played with it
in later stages mum thought it was her own baby. This might sound awful to some, but her teddy gave her so much pleasure

What I am thinking is you could, look after (whatever name you choose) while I go and make us a nice cuppa etc, and if this works then you can gradually build up the time she looks afte her doll/teddy

Hope this helps, I know its far from easy when a person is so anxious

You beat me to it Fiona

 

[frustrated1962]

Hi Number3Daughter
My husband and I are experiencing a similar problem with my Auntie, (she is 93) and it seems like she can not be on her own for a short while.
She rings us constantly asking who's coming up, if we don't go straight away she is out the door! She has an excellent care package in place also "just checking" and "tele care" And Daycentre 5 days and she has company every evening so we don't know what else to do.

 

[LYN T]

My Husband was exactly the same. It was getting a bit dangerous as he would stand touching me when I took dishes out of the oven or when I was using the hob. I was so frightened he would get burnt-but it was always me who did so

He even got anxious when I was on the phone. I gave in also-I didn't know what to say or do to reassure him.

Take care

Lyn T