Advice

‘I want to go home’ - What to say to someone with dementia in care

I lost my husband almost a year ago he had Alzheimer’s and Vascular Dementia diagnosed 6 years previous ly.Because I was a nurse I asked for help from no one. Unfortunately This left me ignorant regarding Attendance Allowance and council tax reductions.Since our savings were plundered to pay for the last few months in a care home.I am now trying to get something back from the council.Who are being very unhelpful. Feeling guilty because I asked for help, for the last few months .On occasions shouted at him for doing silly things. Maybe the memories of our 53 years of a happy marriage will come to the fore. Enjoy them and ask for Support....

Reading these comments only emphasises that we are all unique! I resolved at the outset not to lie! In days gone by Jean would know. What do? No easy answer! I try to change the subject or if I think the answer may distress her then I tell her that it is urgent I go to the loo. I think that we all may have our own way of dealing with it, there is no 'One size fits all' These days seem to have no point or purpose so I just try to make her laugh. If I succeed then the day has been a success!

Wish I’d seen this last year. Lostvdad in August to vascular dementia but he was forever asking to go home when he was in the care home he got really upset at times he wanted to go back to his childhood home or to the one he lived in before he went into care depending on whether he was having a good day or a bad one. Miss him so much I wish I could hear him asking to go home again.

There is no right or wrong way to treat a person with dementia who you have loved and you see them slowly disappear from you, you have to handle it the best way for you, you are not a bad person if you can't go every day. I lost my lovely mum to vascular dementia I went every day and sat with her for 3-4 hours a day the last 5 months my mum didn't know any of us it tears you a part.

My mum has vascular dimentia she has recently come out of hospital after 2 weeks now she is in a assessment home for 3/6 weeks she is very confused and asking to go home I think after her stay in assessment home is going to make her even more confused when she has to move again either back into her own home or into a care home

Watch Dementiaville. It’s enlightening. It’s not lies it’s letting them hear what they want to hear. This has helped me in endless situations. Mum is still at home. She has 3 carers a day. Which if they are safe it’s the best thing for them. I visit most days to see all is ok and chat on the phone. She knows the family. Long may this continue. Mum was diagnosed with dementia about 4yrs ago. She gets a bit aggressive now. So sad to see my loving caring Mum deteriorating month by month. Just keep being as patient as possible

I'm not sure it always is 'lying'. Sometimes I think it's entering another person's reality, it's thier truth not mine and I don't believe I have the right to tell a person in this context that they are mistaken, particularly when the resulting grief is so heartbreaking for them.
People with Dementia are adults, not children who need to be taught 'right' from 'wrong' in order to survive 'the real world'. As such I kind of feel that I need to demonstrate respect and defend thier dignity in a totally different way to how would if I was supporting somebody without these deficits.
If I were having a reasoned discussion with someone who did not have a cognitive deficit that would be different.

My mother in law is in early stages of alzheimers.,we notice she keeps saying she wants to move back to where she grew up and she says this alot .at the moment we can tell her its not how it was as she is still aware of who we are and its just not remebering words for things and where shes been sort of stuff. But reading this article is making me aware now whys shes saying this and in the future if she does have to go into care what wanting to go home is all about.

Thank you for your comments. I lost my Father nearly 8 years ago to vascular dementia he did not recognise us near the end. Now my mother has been diagnosed with the same and at the age of 89 she is now living in an amazing care home for the last 2 months. The staff have helped my mother settle in and reassure myself that she is making friends and she seems happy though she does say she misses where she lived but thinks some of her friends from her last complex are living their with her. I just listen and agree though do feel guiltily I do not visit every day due to work and family commitments.

As a new nurse 35 years ago we were taught to orient and bring patients back to reality. The medical field has learned much in the last couple of decades. Now we say everyone is entitled to know the truth at least once especially when talking about a death of a loved one. But after that you are not doing them any good. Why would you think causing them grief or stress repeatedly is good for them? As always, you have to take into account what level of memory loss the person is at...

My mother has had Alzheimer’s for approx 6 years and unfortunately the last four in a care home. In my opinion having seen my step mother in law and now my mother go through this horrible deterioration there are no right or wrong ways. At the end of the day we are all loving and trying to care for someone in the best way we can. It has affected members of our family if different ways and we have all had to deal with this ourselves but keeping my mum’s interest at the front. My Mum’s sister totally blanks me and my wife as she thought we were horrible putting my mum in a home. The best of it I chose the one just around the corner from where she lived rather than the one more convenient to me as I knew she would be able to visit more frequently than me. It only added to my personal stress of dealing with this issue, but then again as I said earlier we all have to deal with in our own way. Always remember we are try to do the right thing for the person we know, and that comes from our relationships over the years. The hardest thing we found to adjust to is never feel guilty about how you deal with issues like where’s my Mum, Dad or Husband. Whatever makes them smile with you is the correct answer. If there upset that means there’s still a little of the real person left. We have to smile at that irrespective of the fact it hurts. Remember there is no right or wrong way. So don’t beat yourself up. Enjoy the time we have together.

My mother moved into a care home exactly 2 years ago at age 94+ . She was very confused as well as disorientated and very physically frail too. She has seriously declined further since a bad stroke 6 months ago. She has had no mobility since then been bedbound sleeping most of time and communication is minimal with very severe memory impairment. I have always lived some distance from my mum but moved nearer to her last year. I visit once a week as it still takes 3 -4 hours return journey. I spend 3-4 hours + and talk gently to her even if she appears to be sleeping and when she is awake it is often difficult to understand what she is trying to say. She often asks to go back to bed( where she is 24 hours a day) so just needs constant reassurance that she is safe . If she cries/yells out I can't ask her what's wrong as she looks blank and lost at me not understanding the question. I have to ask her simple things like .Do you have pain? Are you comfortable ? and she mostly will say yes or no. It is a desperately depressing situation altogether at this stage. She doesn't recognize me or my brother now and the
nurses are amazed she has survived the last 6 months as she has wasted away but it is stated she must have a very strong heart ! We feel we have lost our mum already because there is so little of her personality there and she is so physically weak. Such a cruel disease . I want my mum's suffering to end.

After reading all the replies, I feel that I am handling my husband's dementia badly .. When he tells me wants to go home, I have gently told him that I can no longer care for him and for his safety he must stay where he is. He has so many delusions about what is happening to him in the facility that I know are not true.
I usually end the telephone conversation at that point and tell him I will talk to his nurse and call again
Most visits end badly. He becomes verbally abusive and I leave before I feel that I am in physical danger. I have been advised that I should stay away for a while as I am a trigger for his agitation. I have been married for 51 years and I know he is scared and sad .I feel a lot of guilt.

I used to be a carer in a dementia home and I found that every single resident was different so had to be assisted differently and for a carer it's the most rewarding jobs and takes someone with a big heart,thick skin and board shoulders u have to react in a split second and be almost mind readers as one day is never the same, you can be asked the same question multiple times a day and can give that individual the same answer 99% of the time to this individual can be satisfied with your answer, but that 1 time it's not the right answer you have to be quick thinking and assess every situation as it happens.
I personally became very fond of quite a few of the residents I looked after and also maintained a professional but friendly raptor with their families too, so much so as to when it becomes those sad and emotional last days/hours it's us carers who show a raw emotion and a level of understanding for a relative who is going through maybe a range of emotions such as loss sadness but also a sense of relief for their parent who is no longer the person they was. For some they have already gone through the stages of grief when the individual has forgotten important memories or personality traits have changed so drastically that the one u once knew so well looks like your relative but acts like a stranger so the relatives that are there at the end know I'm no judge I have seen their good days and experienced their bad days too so I get it why they are numb to it and go through the motions to anyone else it would seem they are uncaring but in actual fact they have already said their goodbye 's numerous of times this is just the practical part that has already been planned.
I take my hat off to anyone who either works within the care sector or the relitive living with relatives who are suffering with this dibillatating disease it is a slow process that I have had first hand experience of witnessing

Good article with sound advice. As a Physio I try lots of different techniques to help patients with dementia. It can be so challenging but having family around does really help patients as they can have periods of remembrance. Distraction can help too but it's key to get to know them and some trial and error to help ease their anxieties. Being in hospital is rubbish when your poorly and even worse if you cannot remember why your there. Stay strong, only you know if your doing the right thing (sometimes there isn't one).