There will be a few of your out there with lots of experience of being a carer and to be honest will be further down the dementia line than we are. I have made three other posts today. We have three separate problems currently with mum and rather than make one long post I thought it would be easier to run each problem past you all. However, it does strike me that all this could be linked. When you are a carer perhaps you stop noticing the general decline in your loved one because you are so used to trying to solve the individual problems. So that is my question to you is - what made you realise there had been a general decline in your loved one? Are there particular markers we should look for. My reason for asking this question is that I do not suddenly want to find ourselves at a crisis point and say where did that come from.
Spotting the decline
- Thread starter twinklestar
- Start date
Hi!..firstly it can depend on whether you live with the person sometimes..I am my dads carer..and care for him virtually every day..he lives with my mum..and is her carer...my mum I think still blanks things out when noticing something deteriorating..and knows that i very rarely miss anything..doesnt react or do anything as she knows I ll do what needs doing...im not saying she doesnt care..but he will not listen to her without making a fuss..and sometimes she reacts but isnt reactive...I know when I walk in through the door if hes ok or on a bad day its just because he can be himself I know when hes deteriorating...he tries not to worry her...when in the house if visitors come..a pretence comes over him!..I take him to most alz society.activities to give her a break..hes relaxed..laughing confused..mixing things up and the people he s met are alike..its sad but hes relaxed with them..I now and again insist mam goes and she then sees the real him..ive fully accepted it..she hasnt....
I knew my dad wasnt right for 2 years before..so had time to read every factsheet..book..website from diagnosis to end of life!..I know that might seem morbid..but now I know what could happen im not waiting wasting life away in anticipation..thats not to say I dont feel sad when things get worse..but s good day is lovely..when hes bad my mother gets an emotional kick in the teeth..theres only so many you can take!...we live for today..and the info and courses have helped..alongside the real stuff caring on a daily basis..to do and use things that make things easier for my dad..we should change to help them not them try to do normsl things to be like us!..watch barbaras story on you tube by nhs guys hospital...its through the patients eyes...very powerful..best wishes
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Difficult question, for me it really is 'where did that come from' I've had 9 months of ups and downs, the obsessive behaviour about different things, some are still with us some I've not seen for a while now. The last week has been a bit unusual in that we have had no sundowning, mum has tended to stay in bed through the night and has stopped asking to go home or insisting on phoning my brother. Good, but then I have noticed that her chatter is more confused and she seems to be searching desperately for the right words and she is also back to thinking there are 2 of me. All very upsetting, but it has only been a week and I Know that we may be back to stressful times. I have noticed how frail mum is, this maybe due to feeling tired all the time, who knows, as I have said, a difficult one.
One of the things I have found incredibly useful is a blog. I regularly update it, just rambling about whats going on with her, and now and again, I do a sort of 'where we are now', looking back over the previous blog relating to this, and contrasting and comparing Mils abilities and behaviour.
Its so easy to just face every individual thing that dementia throws at you and your L.O., and the blog lets me step back, look at the overall picture and evaluate. I've found it really helps when it comes to seeing consultants/specialists, because I can cull from it the information needed to give an accurate account of how she is doing
Its so easy to just face every individual thing that dementia throws at you and your L.O., and the blog lets me step back, look at the overall picture and evaluate. I've found it really helps when it comes to seeing consultants/specialists, because I can cull from it the information needed to give an accurate account of how she is doing
my mum has so very simular syptoms to yours tin,,like you she to has lost the sundowning and need to go home est,,,but last week she seems to be gettng more confused and rambing,,,and her standing too,,asking at times how she does it,,,very sad the way its turning,,prob been more quiet to and dozzing off est,,,,
For me it was when mom did not eat or drink enough & became dizzy & had a few falls. Prior to this she was slowly becoming more confused over about three years. I got the phone calls at all hours "where is your Dad tonight? " (Dad has been gone for 14 years). The other one was "when am I going home?" (She was in her own home of 56 years). She lost a lot of weight but as you say, this along with many other symptoms becomes almost normal & we do not like to admit to there being a problem. All I can say is that if you feel there is a big problem, then I think you know that you need to make decisions before your loved one is in danger. My mom is now in care and is safe, well fed, clean and yes even has others to chat to when she feels like it - all positive. I wish you well. Sue xx
I keep a daily log
It might sound a bit nuts but it helps me cope. I write a comment for each day so I can look back and either reassure myself that things were just the same a year ago, or see a new pattern emerging. My mum used to have 1 or 2 "bad" days each week when she was vague, blank eyes, staying in bed, not eating. That is now up at 4 or 5 now. Since I can see the patterns I can anticipate a bad day in advance. If she has been bright and alert for 3 days a crash is coming.
We all find our own ways of coping. It helps me realise its not all in my mind. So often others manage to get her on a "good" day and I look like a nutcase. Thankfully the social worker has seen her on the "bad". They are slated so much but mine has been a huge help to me.
It might sound a bit nuts but it helps me cope. I write a comment for each day so I can look back and either reassure myself that things were just the same a year ago, or see a new pattern emerging. My mum used to have 1 or 2 "bad" days each week when she was vague, blank eyes, staying in bed, not eating. That is now up at 4 or 5 now. Since I can see the patterns I can anticipate a bad day in advance. If she has been bright and alert for 3 days a crash is coming.
We all find our own ways of coping. It helps me realise its not all in my mind. So often others manage to get her on a "good" day and I look like a nutcase. Thankfully the social worker has seen her on the "bad". They are slated so much but mine has been a huge help to me.
