Hi my mum is 67yrs old she was diagnosed with alzheimers at 61 but probably had it a couple years before diagnosis, my mum had an aunty who had this and my mum used to say i hope i dont get that, my mum is in a ch and has been for 2yrs, it has been heart renching watching her progress with the dementia as it has been very progressive very quickly, i mum is not longer able to walk and also has arthritis in her hands, i am finding it very difficult emotionaly to cope with my mums outbursts of crying, i am unable to make out what she is saying as her speak is not audiable, i am always worrying that she is trying to tell me something and i cannot understand, i have been her main carer since her diagnosis as her husband had a massive heart attack and died in front of her weeks after being diagnosed. My mum had to move to a bungalow with a live in carer, she had many of these carers until we found the right one. I used to visit at least twice a day and every day. Mum unfortunatly was abused by a temp carer whilst her main carer was on holiday, this came to light when mums main carer came back after holiday. My mum would refuse to go into her bungalow when she had been to the day centre and she started to shout "get out i will tell jane"for an hour after being back. She used to tell her carer "i dont mean you" and say sorry, this was very distressing to me as i thought i was so on the ball in checking the carers out and visiting so much, i would always check what she had to eat how she was dressed and would be very supportive to the carers. We had to move my mum in the end as she was not happy in her bungalow. We fought very hard to get my mum to be funded to stay at a young alzheimers care home. Due to her dissabilitys worsening as in not being able to walk she had to move again, she did this another 2 times until we found a good home. I never know what i am going to get on my visit either tears or calmness, Has anyone got any advice in this stage of dementia. I either leave mum and im in tears as i think she is trying to tell me something and that she is not happy with the home or is this normal i always have a feeling of helplessness. Any advice would be great. Sorry this is so long but thought the history would help. Many thanks
Dealing with guilt
- Thread starter Robinson
- Start date
Welcome to TP Robinson. Sorry you have had to find us. My MIL is not in a CH but it seems that you are very 'low' about it all. Have you spoken to your GP about your feelings in case they think you may need something to help you cope during this distressing time
I think helplessness is a normal feeling in this dreadful disease as one can't do anything right. I hope some others come on board to give you more advice and support
Take care x
Hi Robinson and a warm welcome to Talking Point. I'm so very sorry to hear of the heartache you are going through with your mum, it sounds as though you have been on a rollercoaster ride these last couple of years.
It sounds as though you are happy with the home personally but that your mum's crying and her trying to communicate with you are making you worry that she herself is unhappy and you are worried that she is maybe being mistreated?
I personally don't have any experience of this, but until someone who does have comes along, my initial thoughts are that you could have a chat with the manager about your worries, visit at different times of the day so that you get a feel for what is going on in the home when they do not expect you, and speak to other visiting relatives if possible. This might help to reassure you.
Maybe your mum's medication needs reviewing, it may be that she just needs something to ease her anxiety.
I am sure other members will be along shortly with other ideas. Guilty feelings are a common theme on TP, many of us have them, you are not alone.
x
It sounds as though you are happy with the home personally but that your mum's crying and her trying to communicate with you are making you worry that she herself is unhappy and you are worried that she is maybe being mistreated?
I personally don't have any experience of this, but until someone who does have comes along, my initial thoughts are that you could have a chat with the manager about your worries, visit at different times of the day so that you get a feel for what is going on in the home when they do not expect you, and speak to other visiting relatives if possible. This might help to reassure you.
Maybe your mum's medication needs reviewing, it may be that she just needs something to ease her anxiety.
I am sure other members will be along shortly with other ideas. Guilty feelings are a common theme on TP, many of us have them, you are not alone.
x
Hiya Robinson,
Sometimes the crying is nothing to do with being unhappy but is to do with the area of the brain that controls the emotions having been damaged by the dementia. My sister in law has this as a result of a brain injury but she is able to explain how it feels and understands why it is happening, but it still happens as she is not in control of it.
I wonder whether Doll Therapy might help your mum. Get a baby doll and if possible a blanket with it (charity shops have loads for just a few £). Take the doll out and just sit with it on your knee and watch for your mum noticing it. Ask her if she would like to hold the baby and pass the doll over to her. After a while, ask your mum if she could watch the baby for you whilst you go to the shops. Then get up and leave. The background to this is that it appeals to the nurturing instinct in the person and because it is instinctive it is not damaged by the dementia. You can use teddy bears or soft toys instead of a doll. Paying attention to the baby helps to calm the person down. Talking to the doll becomes therapeutic as most adults speak gibberish to little babies, plus there is never an expectation of the baby talking back, unlike the frustration that you both feel when communication is not being understood. It is also a great source of companionship for your mum plus she might have a feeling of responsibility at being trusted to watch the baby for you. It also gives the staff something to interact with her about too. It may not work but if it does it would make all the difference for your mum. Doesn't cost much to try. If you search on here you will find others who have had some great results.
It is easier Sid than done, but don't feel guilty. It is a very selfless thing on your part to recognise where your mum's needs are best met. All too often people struggle on and ruin their own health in the process.
Fiona
Sometimes the crying is nothing to do with being unhappy but is to do with the area of the brain that controls the emotions having been damaged by the dementia. My sister in law has this as a result of a brain injury but she is able to explain how it feels and understands why it is happening, but it still happens as she is not in control of it.
I wonder whether Doll Therapy might help your mum. Get a baby doll and if possible a blanket with it (charity shops have loads for just a few £). Take the doll out and just sit with it on your knee and watch for your mum noticing it. Ask her if she would like to hold the baby and pass the doll over to her. After a while, ask your mum if she could watch the baby for you whilst you go to the shops. Then get up and leave. The background to this is that it appeals to the nurturing instinct in the person and because it is instinctive it is not damaged by the dementia. You can use teddy bears or soft toys instead of a doll. Paying attention to the baby helps to calm the person down. Talking to the doll becomes therapeutic as most adults speak gibberish to little babies, plus there is never an expectation of the baby talking back, unlike the frustration that you both feel when communication is not being understood. It is also a great source of companionship for your mum plus she might have a feeling of responsibility at being trusted to watch the baby for you. It also gives the staff something to interact with her about too. It may not work but if it does it would make all the difference for your mum. Doesn't cost much to try. If you search on here you will find others who have had some great results.
It is easier Sid than done, but don't feel guilty. It is a very selfless thing on your part to recognise where your mum's needs are best met. All too often people struggle on and ruin their own health in the process.
Fiona
Hi Robson
My mum is also in a CH for a year now and is rapidly declined in that year. She is most of the time unable to communicate her words properly and cry's also. I feel very sad at the thought that she is perhaps trying to tell us something important because her expression suggests that . If that makes sense. It is heart breaking to see her like she is unable to walk talk feed herself etc. I believe the distress in her crying is because there is still a little part of her left and she is just totally frustrated that we cannot understand her. We just stroke her hand and reassure her we are there and that she is safe . This seems to help what else can we do but I do understand exactly what you are going through not nice but just be there for her as you have always been .Thinking of you x
My mum is also in a CH for a year now and is rapidly declined in that year. She is most of the time unable to communicate her words properly and cry's also. I feel very sad at the thought that she is perhaps trying to tell us something important because her expression suggests that . If that makes sense. It is heart breaking to see her like she is unable to walk talk feed herself etc. I believe the distress in her crying is because there is still a little part of her left and she is just totally frustrated that we cannot understand her. We just stroke her hand and reassure her we are there and that she is safe . This seems to help what else can we do but I do understand exactly what you are going through not nice but just be there for her as you have always been .Thinking of you x
Hi Robinson,
Didn't want to read and run, so just a line to say welcome to TP, you're in the right place.
Talk soon,
Toni
Didn't want to read and run, so just a line to say welcome to TP, you're in the right place.
Talk soon,
Toni
Hi Robinson, just popped by to see if you are feeling better today. I do hope so.
Fiona's idea about the doll is a great one, and is something practical that you can try, and just doing something always feels better than doing nothing - I do hope you feel like giving it a go.
Good luck and let us know how things go.
x
Fiona's idea about the doll is a great one, and is something practical that you can try, and just doing something always feels better than doing nothing - I do hope you feel like giving it a go.
Good luck and let us know how things go.
x
Hi 1954,
Hi 1954
Thank you for your reply, i am low sometimes especially if i have had a difficult visit, i do not think i need anything to help me cope from the doctors, just be good to speak to other people in the same situation or have been.
Thanks again
Hi 1954
Thank you for your reply, i am low sometimes especially if i have had a difficult visit, i do not think i need anything to help me cope from the doctors, just be good to speak to other people in the same situation or have been.
Thanks again
Hi college girl
Thank you for your response, think you are right about having a chat with the manager maybe let her know some of my concerns, and i do feel concerned that i might be missing something my mum is trying to tell me, i have thought that maybe my mums medication needs reviewing as she could be hallucinating and that is why she shouts and crys, it helps to know that my feeling guilty is more common than i thought
Many thanks for your kind words x
Hi fiona
Many Thanks for your advice, we have tried the doll thing before and it seemed to work for a short time, but now she does not understand that it is a doll as she would throw it. My mum used to like me stroking her hand softly and holding it, but now she does not seem to know it is me holding her and pulls her hand away, its as if she does not like being touched and she just gets aggitated and starts to shout. I am worried this may affect my health so i thought id better join a forum to help me understand the stages of this awful disease, i know that for some people they have sadly already been through the stage my mum is at and it would be great if anyone could offer advice and knowledge.
Thanks for your response again x
Hi you have explained exactly what i think. You have absolutly made sense, sometimes you think you sound like your depressed and not coping because you try to explain this to friends. My mum does look at me very deeply when she is upset as if she is trying to tell me something, it is the sadness and lack of being able to understand her that is so upsetting, i feel quite helpless and i think because of the previous abuse it upsets me more, i am sorry to hear you and your mum are also going through this, but you have helped me to know that other alzheimer people go through the same feelings and upsets that my mum feels, with out wanting anyone to go through this if you know what i mean x
Hi college girl
I had a good visit last night with my mum, she was quite calm and relaxed, i took her sme flowers and i always take a nice cake or trifle for her and she lets me feed her. As soon as i get there she puts her finger in her mouth as it trying to eat something so i think she knows that when i visit i have something for her lol, am going up again tonight so am hoping i get two good visits in a row wish me luck, many thanks x
Hi Robinson, so sorry for this situation you're all in, but I'm glad you've had a good visit this time. The inability to communicate is so frustrating and I wonder whether we project some of our own emotions into the behaviours or vocalisation. I think you need to let go of the guilt you still carry from when your mum was at home, some things are simply out of our control, and you're clearly doing your very best, you can't do more. I am a great one to preach about guilt, I have been such an expert in my day, but it really is a wasteful emotion and doesn't help your mum or you.
I just wish you many more good visits than bad visits and I hope you can believe that the bad ones are out of your control and certainly not your fault or responsibility. It is just a huge roller coaster full of ups and downs, and we are on the ride, not the controller.
Take care,
Stephanie, xxx
I just wish you many more good visits than bad visits and I hope you can believe that the bad ones are out of your control and certainly not your fault or responsibility. It is just a huge roller coaster full of ups and downs, and we are on the ride, not the controller.
Take care,
Stephanie, xxx
