Welcome to Dementia Talking Point! Find out more and say hello.

[Mia123]

Just wanted to say hello. My mother has vascular dementia, she had a step change about 5 weeks ago and after sleepless nights, a fall, increased agitation and confusion, we have just moved her into a carehome. As you can imagine, under lockdown this is probably the hardest time to do this for her but we felt the right and only decision in the circumstance and desperately wanted to avoid her falling again and being hospitalised. Understandably my mother is struggling, we are into 10 days and have had some good conversations with her but mainly she is sad, confused and wants to come home. We are sticking with it but it’s hard. She has no idea how progressed her dementia is or the amount of care she needs. She has to be encouraged to stay in her room for another 4 days and then can have a bit more freedom in the carehome and we hope this may help her settle. It has been so hard as I feel I’ve let her down and hate her being so upset. Feeling a bit rubbish so any words of encouragement gratefully received.

Hi,
I am on the forum as my Mum who I care for has also had a huge change this week [was hospitalised for one night as well] She had very mild vascular dementia before Wednesday this week. I may have to make the same decision as you one day and I know it won't be easy. I found this piece of writing on an American website late one night after I had to put my Dad in a nursing home last year and was wracked with guilt. Please realise that it gets to a point where you 'must' look after your own health before you can start to think about looking after anyone else.

Make a Personal Declaration
Think about the following self-statements and decide to make them a part of your daily life:

Taking care of myself is necessary if I am to give care to others.
I know my own limitations and strengths. I seek help when I need it
I have the right to feel what I feel and to express those feelings in a calm manner.
I maintain the right to my own life outside of care giving.
I take pride in my accomplishments and in the courage it takes to perform these tasks.
I realize that I cannot control the happiness of another person. I cannot fulfill all of his or her needs. No one person can.
I have the right of choice, to decide what I will or will not do. This includes the right not to be manipulated by anger, fear, or guilt of my loved one.

 

[Suzicullen]

Hi my name is Suzanne and my husband has dementia which hasn’t been too bad for the last two years but since lockdown he has really deteriorated and I’m really struggling with him as he doesn’t believe we live in our present house and keeps packing a case with obscure things and asking me to drive him to the airport to fly home. I’m at my wits end and don’t know how to cope with him.

 

[jennifer1967]

hi im jenny and my husband has vasc. dementia. it was caused by a ministroke 15 months. i have also worked in a care home specialising in dementia. could you say that we stop here tonight and maybe go home in the morning. where does he think home is? could the car run out of petrol for the airport run. couldnt get a plane ticket for that time especially now as most aircraft are grounded.could you leave the suitcase packed with whatever. distract him favourite food cup of tea. ive seen on the forum some say he is anxious and looking for his safe place.only suggestions to buy you some breathing space

 

[karaokePete]

Hello @Suzicullen and welcome. I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list. In particular, I would suggest a look at the section of the Publications list that covers 'Caring' as there are Factsheets on 'Walking about' and 'Changes in Behaviour' that may refer to some of the issues you are experiencing.

As to communicating being an issue, a few handy tips can be picked from the useful thread that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Jayne M]

Hi my name is Suzanne and my husband has dementia which hasn’t been too bad for the last two years but since lockdown he has really deteriorated and I’m really struggling with him as he doesn’t believe we live in our present house and keeps packing a case with obscure things and asking me to drive him to the airport to fly home. I’m at my wits end and don’t know how to cope with him.

Hi Suzanne. Life is so difficult at the moment, isn't it? We have my dad staying with us during lockdown but he thinks this is his house and we really shouldn't be in it. He keeps putting things away and rearranging furniture. Also cleaning, but obscure things. We also have to go up to bed around 9PM as he insists on checking the doors and turning all lights and switches off himself. He's a great one for packing cases too and always wants 'to be off now'. No advice to give, just stay strong and know you're not alone.

 

[Suzicullen]

hi im jenny and my husband has vasc. dementia. it was caused by a ministroke 15 months. i have also worked in a care home specialising in dementia. could you say that we stop here tonight and maybe go home in the morning. where does he think home is? could the car run out of petrol for the airport run. couldnt get a plane ticket for that time especially now as most aircraft are grounded.could you leave the suitcase packed with whatever. distract him favourite food cup of tea. ive seen on the forum some say he is anxious and looking for his safe place.only suggestions to buy you some breathing space

Thank you I will take your advice and hope it helps.

 

[qfda3801]

Hi there. Im Micah, and I'm 19. I joined because I have been seeing worrying things with my stepdad since before I moved out in August, and now notice more every time I'm home. I am hoping to gain support and see other's experiences and try to figure out some next steps.

 

[Izzy]

Hi @qfda3801 and welcome to the forum.

I’m sorry you have worries about your stepdad. I’m glad that you’ve found this forum and that you have started your own thread and am sure you will get lots of help and support here.

 

[Suzicullen]

Hi Suzanne. Life is so difficult at the moment, isn't it? We have my dad staying with us during lockdown but he thinks this is his house and we really shouldn't be in it. He keeps putting things away and rearranging furniture. Also cleaning, but obscure things. We also have to go up to bed around 9PM as he insists on checking the doors and turning all lights and switches off himself. He's a great one for packing cases too and always wants 'to be off now'. No advice to give, just stay strong and know you're not alone.

Thank you.

 

[MAQ]

I'm new to this.
Anyone please guide me how to participate.
Many Tanks

 

[Cat27]

I'm new to this.
Anyone please guide me how to participate.
Many Tanks

Welcome to DTP @M.A.Qureshi
i think you may find this but if the forum useful https://forum.alzheimers.org.uk/forums/i-have-dementia.56/ Please have a look & start your own thread if you would like to.
Please keep posting as you’ll get lots of support here.

 

[nitram]

Anyone please guide me how to participate

>>>Quick guide to using forum<<<

 

[InèsPM]

Hello all, my name is Ines and I've just joined because my mother has Alzheimers. She was diagnosed about five years ago, and it has been a difficult adaptation for her and my family. It's hard to see her disappear slowly and to have to constantly adapt to a new status quo. My sister and I are also worried about my father, who is her main carer. So I just joined the forum to talk to other people in a similar situation and hopefully feel a bit less lost and lonely! Thanks all

 

[canary]

Hello @InèsPM and welcome to DTP

Im sorry to hear about your mum and I know what you mean about watching her slowly disappear..

This is a wonderfully supportive forum. Feel free to join in the conversations and chat to people on threads, but you might also want to start your own thread so that more people will see it. There are several ongoing threads by people who are posting about their day to day living and chatting to other people who post on them.

 

[karaokePete]

Hello and welcome from me too @InèsPM

I wonder if you may find any local support services like a memory café to be of some use. You can do a post code check to see what's available to you by following this link https://www.alzheimers.org.uk/find-support-near-you

The full list of the very informative Factsheets can be found with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

If communicating becomes an issue, a few handy tips can be picked from the useful thread that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[willeriner]

Hello, my name is Willerina, I am new and hope I am doing this right. My husband has dementia, legally blind, and aggressive prostate cancer. Just recently at night, he is peeing on the carpet in my bedroom, office, and hallway. This is very upsetting to me and I felt like he was doing it because he was angry with me. I am at wits end I don't know what to do. I keep shampooing the carpet but so tired of not getting much sleep. Thanks for listening I just really need someone to talk to who understands.

 

[nae sporran]

Welcome to the forums, Willerina @willeriner. You and your husband have so much to deal with, I can't begin to understand how hard it is. However patronising it sounds sometimes, you know he is not doing it to upset you, but you need some help and support from social services if that is not already in place. A care needs assessment should be requested if you are in the UK.
You will find support here and advice from others going through similar things, so keep in touch and star your own thread when you are ready.

 

[Bunpoots]

Hi @willeriner welcome from me too

I really feel for you. My dad peed everywhere and it used to get me down. He didn’t know he was doing it. He just leaked as he walked around and blamed everyone else for the wet patches. The best thing I did was buy an electric carpet shampooer which really made cleaning up after him much much easier. Hopefully that’s what you have too.

Have you approached the continence clinic about your husband’s behaviour? I’m not sure how much they can help but I managed to get pull-ups for my dad which made a difference when I could get him to wear them.

I hope now you’ve found us you will continue to post - even if we don’t have solutions I found it helpful to talk to people who understand and offload some of the stress. As @nae sporran says it’s a good idea to get a care needs assessment - I resisted for a long time thinking I could do everything myself but the help made a massive difference.

 

[Ziggy68]

Hello, thanks for the welcome. I have spent the afternoon reading a few threads. I contacted you because I’m worried about my mum who is coping with my step father. He has not had an official diagnosis but has shown many symptoms for sometime now. He seems to be hallucinating, to the extent he is offering people food and drinks in the house, forgets he is married and often forgets who my mum is. She is trying to cope but it’s hard at the moment as I can’t even take her out for a little relief.
I’ll continue to explore the forum and when I’m ready hopefully post myself.
x

 

[nellbelles]

Hello and welcome to DTP @Jane feeney
I’m glad you have found the forum it’s a friendly and supportive place to ask for support and advice
now you have found us I hope you will continue to post