Dementia Support Line
Your answers: After the move
Talking Point members share advice about adjusting after a person with dementia moves into a care home.
Canadian Joanne says,
‘What I did when my mother first went into a retirement home, then a nursing home, was to get to know the staff as well as possible. I am a sociable and chatty person, so it wasn't difficult for me to do so. Having that personal relationship with many staff members was extremely helpful to me. In fact, I once heard one staff member say to another that I was “one of them”.
‘It is important to realise that the staff are human also, and have their own cares and woes. If they do the best they can, we can ask no more.’
maryjoan says,
‘I had an Aunty Betty. She was lovely, and much loved. She ended up in a care home in the late stages of dementia. It was many miles, and across the water from me, but I went to see her. There was a new manager in the care home who insisted that all the residents have their names on their room doors. My aunty's room said that she was called “Elizabeth”. I was furious!
‘I understand that hearing is just about the last sense to leave us when death is approaching. I reasoned that if Aunty Betty had any remnants of the lady I knew, and could hear and make a little sense of what she heard, she would be very lonely, because if they were calling her “Elizabeth” (and they were) she would not recognise herself. I asked them to call her “Betty” and put “Betty” on her door.
‘Now, as my loved other half becomes more distant, I hope when or if the time comes, I will be able to give the care home that little bit of information that might tell my other half that he is still loved and not forgotten. The devil is in the detail.’
Ree123says,
‘Make use of any respite opportunities there are. It’s not cheap, but to know for 24/7 your loved one is cared for, while you can sleep, is worth its weight in gold.
‘Know that having to put your loved one with dementia into a nursing home is not failure as a carer. You are doing the best you can for them. You were on call 24/7 and it’s exhausting, leading to carer burnout, mental health issues, stress and associated health problems.
‘A nursing home has a team of people on call for your loved one, a member of their staff works a shift and is not there 24/7 like you were. You will find (if the home is a good one) that your relationship with your loved one with dementia improves. After that period of total rest, you will begin to find you, the person before the carer role took over... No guilt.’
canary says,
‘When Mum moved into her care home I tried to think of it as her having just moved. If she had moved to a flat or even a bedsit it would have been OK, but the fact that it was a care home seemed to make it different. So I never, ever said to anyone (not even myself) that I had “put her in a home”, but decided to think of it as Mum having moved to a bedsit with communal facilities and staff around to help her. If I thought of it in terms of Mum just having moved home again, it made it easier.’
Dementia Support Forum
Jale says,
‘Mum has been in a nursing home since September, and I have found it difficult to “let go”, having to put my trust in strangers to look after her and care for her.
‘Getting to know the carers and to share things that Mum used to like doing (or not as the case may be), and to watch the carers interact with her, I can see the carers that Mum likes and those she doesn’t – not because they have done anything wrong but for some reason in her head she doesn’t like them. I found out the other day that Mum doesn’t like one carer because she is tall!
‘I can now spend more quality time with Mum, as I am not nagging at her to eat or drink etc, and that is a big bonus that I have accepted gratefully.’
Your turn
What advice would you give to make sure a person with dementia who’s had a fall gets the support they need?
Let us know by 4 March 2019 so we can share it in our next magazine.
Colin
saysMy wife, aged 70, was diagnosed with frontotemporal dementia in September 2017. She has deteriorated frighteningly quickly. In February this year I was struggling to cope with full on 24 hour caring and I was persuaded by our NHS Community Physchiatric Nurse to try a week's respite by placing my wife in the dementia Ward of a local (ish) hospital. Within 24 hours the hospital realised just how much attention she needed (rather than nursing) and I was gently persuaded to consider a permanent care home place. My wife never came home and has been resident now in the care home for 7 weeks. We were lucky to get the place and she is content and extremely well cared for and I have to admit they do a better job than I ever did. But I cannot shake off the guilt and sense that I have abandoned and betrayed my wife of 49 years. These feelings are made worse by the fact that she does not look unwell at all, she is very placid and cooperates with her carers. I can't help feeling being judged harshly by everyone around me for having failed to last the course. I find visiting very difficult as she cannot communicate at all and is very restless, we can't even sit together in companionable silence. There is such a deep deep sadness that our life together is over and there seems little point left in either of our lives.
Hello Colin.
Thank you for getting in touch. I am sorry to hear about the deterioration of your wife’s dementia and the fact she is now in a care home. I would say some of the feelings you are experiencing are very common place. Feelings of guilt are often shared by carers and at different stages whilst caring for their loved one, in addition this might be might be intermingled with feelings which might be likened to something familiar to bereavement and loss.
You mention in your message that you feel judged, but regrettably due to the progressive nature of dementia people often end up in carehomes and this isn’t reflective of a failing on your part. It is very common for carers to have a sense of helplessness and hopelessness and you might very well be describing the feelings of depression. So it might be wise to get yourself checked out by your doctor.
This transition period is not going to be easy but on the positive side at least your wife has adapted to her new environment, this so often is not the case. If your visits are causing you too much personal upset, during this time of adjustment it might be wise to not go as often – perhaps even talk to the home about it.
I would highly recommend ringing us direct at the National Dementia Helpline for some emotional support and to discuss this matter further and we can also put you in touch with a local service of extra face to face support tel: 0300 2221122. You may also find it helpful to also have a look at our online forum Talking Point on the following link: https://www.alzheimers.org.uk/get-support/talking-point-our-online-comm…. The feelings you are describing are very common and please do not feel you are alone and seek out the support you evidently need.
Kind regards.
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Alzheimer's Society Helpline Team
Stephanie Lane
saysMy lovely husband was diagnosed with Alziemers when he was 65. This is considered early onset. We managed ,well, at home for three years, then he went missing overnight for 6 hours. I was no longer able to keep him safe. He is now in a care home. Has settled in well, however his dementia is increasing. He still knows who I am and recognises some of our family members, but he is losing his inhibitions. Voiding inappropriately, gusting down his food and at times saying inappropriate things to people. When we reflect over the past years, there were signs 7 years ago. One of the very early symptoms is a loss of smell. This happened some 8 or 9 years ago. I knew this and expected a dementia diagnosis, but hoped against hope we would have more time. In effect, it is like being widowed. I live alone, with my dog, go to work and come home to an empty house. The last few years have been about looking after my husband, and now he is not here. I have to get used to flying solo.
Mookie
saysFeel so awful after visiting mum in her care home. She’s very low and says there’s no point in going on if this is her life. She longs to go out in the garden but doesn’t think she’s ‘allowed’. She doesn’t understand it’s freezing cold and raining. I keep trying to distract her but she keeps going back over the same frustrations. I’m beginning to dread visiting her but worry constantly while im not there.
Joanna Crawford
saysMy mother has recently gone into a care home, following a fall and fractured pelvis. My Dad has been her carer for years and at 88 very tired and struggling to cope himself, especially as he had to get up anything up to 13 times a night with my Mum. Before we found the care home, my sister and I shared looking after her, and after a couple of nights I was already feeling exhausted. The home came highly recommended by her day carers, her GP and people in the Assisted Living apartment block where they live. However, it is heartbreaking leaving my Mum there, knowing that she is asking for my Dad repeatedly, and doesn't understand where she is and why. I find myself crying a lot over the past week while she has been there.
I am trying to keep busy thinking of things which might help her to settle. I bought her a teddy bear and a white board for messages from my Dad. I also used an online card company to make a large card with her photo on the front with "Hello I am Ann. Thank you for caring for me. Read about me inside". I then wrote about Mum, her likes and dislikes, her life history in brief, her family etc etc on both side of the inside, where you can write your own text. This has gone down well with the carers who are looking after her.
Someone write that it is like leaving your child a nursery for the first time. I think it is worse...as for someone with dementia, every day is like the first day in a care home, all over again. I just hope it will get easier.
Donna Clark
saysMy mother went into a Residential Care home on the 13th February. I can honestly say it is the most emotional upsetting time of my life, and probably hers. Do these feelings of utter despair and deepest sadness (most likely even guilt) fade? I just can't seem to pull myself together. I never realised or anticipated what it would feel like. I do however now know what it is like for families and loved ones that are faced with this. My heart goes out to every one of you.
Joanne Watkins
saysDonna, I know exactly how you feel. Our family looked after our mother until we absolutely couldn't do it anymore and she went into a residential care home in November. I know that it's for the best: for her and for us but it has been the most emotionally upsetting time of my life and I'm struggling to stay positive & look forwards.
Ray Carter
saysMy wife has just gone into care, i feel lost without her and struggling to cope
Hi Ray, thanks for getting in touch.
We're very sorry to hear you're going through such an upsetting time at the moment. You may find talking to one of our advisers helpful. They're here for you on 0300 222 11 22.
Wishing you all the best at this difficult time,
- Alzheimer's Society blog team
Hi Catherine, thanks for sharing this! The scrap book sounds like a brilliant idea and I'm glad to hear it's been useful for your mum. We'd love to hear more about it and potentially post a story on our blog (https://www.alzheimers.org.uk/blog). If this is something you're interested in, you can find details of how to contact our blog team here:
https://www.alzheimers.org.uk/blog/share-your-dementia-story-our-blog
Thanks again,
- Alzheimer's Society blog team
Catherine Eaton
saysWe recently in November 2018 had no option but to put our mum who has alzheimers, in a care home as she was not able any more to live independently any more. She had had after two accidents, after the second one, she spent 10 weeks in hospital.
As you can imagine this was a sad, tough, heart wrenching decision for us. Mum went in during the Christmas period when there was a lot of activities, parties and festivities which was great. We are now experiencing mum’s realisation of where she is and has become unsettled. My sister had a fantastic idea of creating a scrap book to ground her in her new environment. It was so successful I just wanted to put it out there for anyone else that might find it useful. It is very basic and could be best described as a manual for mum. It could be quite daunting to wake up and not know how you day pans out, or where you go for a cup of tea or what time meals are?
This book is very personal to mum tells her where she now lives with a picture of the building from outside who visits her on what day eith our telephone numbers if she wants the staff to ring her. etc etc with pictures so she can recognise staff and rooms in the home. It sounds very simple but we have found mum reading it and becoming more grounded as she knows what to expect during the day.
She obviously has memory photo books of the family but this gives her structure and grounding and she does not worry as much or become anxious but refers to her book to find out eg when lunch is.