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Mum thinks she stuck away from home - vascular dementia at end of life

Jayn

New member
Jul 23, 2021
6
0
Been caring for my mum age 90 for end of life care for multiple illnesses including heart failure and bowel cancer, new diagnosis of vascular dementia that seems to come an go with onset of fatigue mainly but has become much more frequent in last few weeks. Mum is very ill and is mainly bedridden confined to her bedroom (legs won't hold her up most days) some days gets to chair next to bed for couple of hours. Problem is vascular dementia (new diagnosis) is causing her to believe she is out somewhere (multitude of places) and is stuck there wanting to go home often with her cat!! She becomes extremely distressed, does not recognise she is in her bedroom and seeing things that simply are not there, an nothing you can say will convince her all is ok. Really struggling as she is confined to one room upstairs now. (can't whip her out round the block an hey presto home to relieve the issue). The only thing to make all this go away is sleep but obviously that is impossible nearly to get her to sleep when she is convinced she is stuck somewhere else. This can go on for hours an gets worse as time goes on. I have zero idea how to deal with this best and it is far worse the days the carers are there. It awful seeing her so distressed an if anyone has any advice how to best deal with this I would be very grateful. Memory clinic told me there is no medication that helps vascular dementia and pretty much wished me good luck an goodbye. So any help appreciated. Thankyou
 

Whisperer

Registered User
Mar 27, 2017
299
0
Southern England
Dear @Jayn

My mother had Vascular Dementia and there is no treatment for the condition. However the advice you received was I suggest a little less than helpful.

Your mother is experiencing high levels of anxiety. There are drugs which can help to reduce that condition. Left untreated your mother will possibly slip into depression. I suggest contact the GP who can prescribe a treatment to ease your mother’s anxiety. Or you may have to recontact the Memory Clinic, who frankly in this case have behaved in a very unhelpful way. No treatment for Vascular Dementia but hey Sherlock what about helping out with related consequences like anxiety.

From my own experience I know how upsetting this type of situation can be. What I am about to suggest may or may not work. I use to talk to mum and try and identify where she was in her own mind. No point trying to convince her it is not real she simply was unable to accept that. I use to “step into mum’s world” even when it meant we were 200 miles away in Wigan visiting a long lost relative who would now be over 130 years old. I advised mum we would go home once the taxi I had ordered arrived. It was countless times delayed by mechanical breakdown, bad weather, etc. In the meantime I would try and distract mum to another subject, or failing that we would discuss the relative, Wigan the town, etc. Anything which at least for a while reduces the anxiety level.

Please understand doing the above is to help your mother. It means you have to step into her reality. It might seem morally wrong but if it helps the loved one then so be it. Her suffering is causing you distress so staying as you are is not a great option. Just try and go with the flow. Hopefully the GP will prescribe a treatment to reduce the anxiety.

One last thought. How are you holding up? Stressed, tired, emotionally upset. No criticism intended. My mother died earlier this year and the last few months in lockdown were exhausting physically, emotionally and mentally. If you are getting badly worn down please tell the doctor.

You are doing an incredibly difficult task. You have my respect and very best wishes. Hope some of the above is useful.
 

Jayn

New member
Jul 23, 2021
6
0
Dear @Jayn

My mother had Vascular Dementia and there is no treatment for the condition. However the advice you received was I suggest a little less than helpful.

Your mother is experiencing high levels of anxiety. There are drugs which can help to reduce that condition. Left untreated your mother will possibly slip into depression. I suggest contact the GP who can prescribe a treatment to ease your mother’s anxiety. Or you may have to recontact the Memory Clinic, who frankly in this case have behaved in a very unhelpful way. No treatment for Vascular Dementia but hey Sherlock what about helping out with related consequences like anxiety.

From my own experience I know how upsetting this type of situation can be. What I am about to suggest may or may not work. I use to talk to mum and try and identify where she was in her own mind. No point trying to convince her it is not real she simply was unable to accept that. I use to “step into mum’s world” even when it meant we were 200 miles away in Wigan visiting a long lost relative who would now be over 130 years old. I advised mum we would go home once the taxi I had ordered arrived. It was countless times delayed by mechanical breakdown, bad weather, etc. In the meantime I would try and distract mum to another subject, or failing that we would discuss the relative, Wigan the town, etc. Anything which at least for a while reduces the anxiety level.

Please understand doing the above is to help your mother. It means you have to step into her reality. It might seem morally wrong but if it helps the loved one then so be it. Her suffering is causing you distress so staying as you are is not a great option. Just try and go with the flow. Hopefully the GP will prescribe a treatment to reduce the anxiety.

One last thought. How are you holding up? Stressed, tired, emotionally upset. No criticism intended. My mother died earlier this year and the last few months in lockdown were exhausting physically, emotionally and mentally. If you are getting badly worn down please tell the doctor.

You are doing an incredibly difficult task. You have my respect and very best wishes. Hope some of the above is useful.
Thankyou so much for your reply i will try all of it an get onto the gp. I have asked her where she is an the reply to that have been breathtaking and fairly often related to something that has been on tv or in the news, including Prince Phillips funeral, Wimbledon and with Alan Titchmarsh. I did once tell her she had fallen asleep in the car and we were now back home. That kind of worked after alot of convincing but it took along time. I will tell the GP what is going on an hope she can be calmed down at least. Its my first experience of dementia and what a hateful disease it is. Thank you again for the advice and i will be sure to take it. I am sorry to hear you lost your Mum. As for me I hanging in there trying my best i am fairly certain this is not a massively long term problem due to all her other illnesses which are vast. I just want to ease her obvious suffering. 🤞
 

Whisperer

Registered User
Mar 27, 2017
299
0
Southern England
Dear @Jayn

You are more than welcome. No doubt others will reply in due course. I stumbled onto this forum in 2017, like you no direct experience of Dementia. The advice I received from strangers was humbling. Mum died of heart failure but with guidance and support I was able to ease her suffering from the Dementia as best I could. Just knowing I was not alone meant a great deal to me. I try now where I can to give back to others still helping loved ones with this dreadful illness.

Thank you for your regards on my mum. You may well be right that your circumstances will not be long term regarding your mum’s other conditions. That said be mindful of the strain it is putting on you. Clearly you want to do the best you can for your mum, but taking care of yourself emotionally, physically and mentally is important. One last tip. When caring as you are it is sometimes hard to get a break or feel comfortable doing so. I use to use mental imagery to “take a break” if only for a few moments. A favourite place, song, memory, etc, call it to mind and keep as a gift to yourself. You may not be able to get out much physically but mentally you can and best of all it is free. A gift you can give to yourself.

My very best wishes. Your mum most likely cannot say thank you for your efforts as her capacity to understand what you are doing for her has reduced. So I will say thank you for her.
 

Jayn

New member
Jul 23, 2021
6
0
Dear @Jayn

You are more than welcome. No doubt others will reply in due course. I stumbled onto this forum in 2017, like you no direct experience of Dementia. The advice I received from strangers was humbling. Mum died of heart failure but with guidance and support I was able to ease her suffering from the Dementia as best I could. Just knowing I was not alone meant a great deal to me. I try now where I can to give back to others still helping loved ones with this dreadful illness.

Thank you for your regards on my mum. You may well be right that your circumstances will not be long term regarding your mum’s other conditions. That said be mindful of the strain it is putting on you. Clearly you want to do the best you can for your mum, but taking care of yourself emotionally, physically and mentally is important. One last tip. When caring as you are it is sometimes hard to get a break or feel comfortable doing so. I use to use mental imagery to “take a break” if only for a few moments. A favourite place, song, memory, etc, call it to mind and keep as a gift to yourself. You may not be able to get out much physically but mentally you can and best of all it is free. A gift you can give to yourself.

My very best wishes. Your mum most likely cannot say thank you for your efforts as her capacity to understand what you are doing for her has reduced. So I will say thank you for her.
Your help and kindness is so appreciated especially today as been very tough. I cannot say thank you enough for the advice. Caring for someone like this can be very mentally exhausting. I often dream of a holiday somewhere lovely one day an it just keeps me going. I took mum to Florida for a so called "last knees up" in 2005 and we often talk about it she seems to remember every detail an refers to it as a trip of a lifetime, it makes her smile even now. I wish you all the very best for the future and thank you for giving your time on here to help others like me. I believe its the toughest test any of us will ever face. I hope ur future days are happier and your memories treasured. 😁
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,728
0
Yorkshire
hello @Jayn
a warm welcome to DTP

I appreciate that you are trying so hard for your mum to have her comfortably at home ... I wonder though, as you describe how she often doesn't know where she is, maybe it's time for a move to residential care so that she has support around all day every day ... it may be that having carers, and other residents, as company and to help her, she may fell less distressed ... it would also take some of the strain off you, so you can visit her as her daughter, rather than constantly being concerned about her being on her own

I do agree that it's worth looking into meds to help with her anxiety, so have a chat with her GP
 

Jayn

New member
Jul 23, 2021
6
0
Hi thankyou for your reply, Mum has 24hr care at home, 4 days with live in carers and 3 days live in by myself. She is generally happy except for these bouts of severe confusion as she becomes tired. Which at this point in her many medical issues is constant. It 2 or 3 hours awake and 3 hours asleep routine pretty much. Things have just got alot more restless in last 2 weeks. I will be contacting her Doctor.
Thank you.
 

lollyc

Registered User
Sep 9, 2020
408
0
I agree with @Whisperer , there may be no medication to specifically deal with the dementia, but there are numerous ones to help with anxiety etc. My mother has a non-specific dementia for which there is no treatment, but takes Mirtazipine, Quetiapine and Lorazepam to help with the behavioural issues that go with the territory. Her GP should be able to prescribe.
No consolation, but I also found the Memory Clinic to be worse than useless, and very dismissive.
 

Jayn

New member
Jul 23, 2021
6
0
Hi thankyou for your post.
I am seeking help now but yes the Memory Clinic were woefully inadequate in advising what would be heading my way, how quickly this would progress to becoming a major issue and any advice on how to manage it. It was a case of diagnosis, sorry no treatment, goodbye. Literally.
Kind regards
 

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