My Dad is scared....

PHTips

Registered User
Jul 25, 2017
1
0
My Dad has been diagnosed with Alzheimer’s and is at least at the moderate to severe stage. Every night now he seems to be hit with what seems to be a moment of clarity or lucidness where he eloquently expresses just how terrified and scared he is of what’s happening and he describes how it feels to him. This is breaking my heart as I hear it and my Mum is trying to console him. I’m not expecting any magic answer just hopefully that this won’t last long or that there is something that can be prescribed to help him sleep.
 

YorkshireLass

Registered User
Feb 15, 2017
222
0
Ilkley
Hi PHTips, my mum used to say "I don't know what's happening to me but I don't like it" and all I could do was reassure her that she isn't on her own and we will look after her. As the Alzheimer's progressed she no longer expressed her feelings but all too often she is really upset. She is terrified, cries and says she is frightened. Usually clinging onto me with both hands like a child who is being left at nursery and doesn't want to be there. GP is aware and sees mum regularly. I am currently kicking a fuss up with the Elderly Mental Health team, followed by the community psychiatric nurse as an explanation of "Alzheimer's is progressive and her disease is progressing" is unacceptable. We wouldn't leave a child or a family pet in this state so why an elderly lady. Mum has now been referred back to the consultant to investigate medication. She currently takes a small dose of Lorazepam from the GP that doesn't appear to do anything and does not prevent her from being up all night. It's a struggle to get help but I won't give up that's for sure.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hello @PHTips
welcome to TP
sometimes the moments of awareness are more heart-rending than those times when our parents seem to be lost in a world of their own - my dad can't really converse anymore but there are times when he is clearly upset by his condition and I can only be on hand to comfort and smile
I do agree that his GP, and consultant if there is one, needs to know about how your dad feels, and also how your mum is, as maybe some meds will help
 

yak55

Registered User
Jun 15, 2015
616
0
Hi PHTips, my mum used to say "I don't know what's happening to me but I don't like it" and all I could do was reassure her that she isn't on her own and we will look after her. As the Alzheimer's progressed she no longer expressed her feelings but all too often she is really upset. She is terrified, cries and says she is frightened. Usually clinging onto me with both hands like a child who is being left at nursery and doesn't want to be there. GP is aware and sees mum regularly. I am currently kicking a fuss up with the Elderly Mental Health team, followed by the community psychiatric nurse as an explanation of "Alzheimer's is progressive and her disease is progressing" is unacceptable. We wouldn't leave a child or a family pet in this state so why an elderly lady. Mum has now been referred back to the consultant to investigate medication. She currently takes a small dose of Lorazepam from the GP that doesn't appear to do anything and does not prevent her from being up all night. It's a struggle to get help but I won't give up that's for sure.
I'd be interested to know how you get on yorkshirelass as my mum is exactly the same and is on memantine 20mg but seeing the gp tomorrow to tell him about her being upset, frightened, anxious, crying, wandering, which doesn't stop at night, also thinking other people are in the house and that her mum is coming to see her (her mum died in 1981).
I'm scared myself, it's a terrible disease and frightening for carers too.
Good luck when you see the elderly mental health team. I've not seen them and I'm not sure what they do.
 

YorkshireLass

Registered User
Feb 15, 2017
222
0
Ilkley
I'd be interested to know how you get on yorkshirelass as my mum is exactly the same and is on memantine 20mg but seeing the gp tomorrow to tell him about her being upset, frightened, anxious, crying, wandering, which doesn't stop at night, also thinking other people are in the house and that her mum is coming to see her (her mum died in 1981).
I'm scared myself, it's a terrible disease and frightening for carers too.
Good luck when you see the elderly mental health team. I've not seen them and I'm not sure what they do.
Hi yak55, I'll let you know how I get on. So far we have had the appointment with The Elderly Care Mental Health. Three of them and 20 minutes late for 10.30am appointment. I felt as if they listened but I felt it was (in their words) "get it off your chest" meeting. I was just missing the "there, there" and a pat on the shoulder! At one point I was told that my stress levels were too high and they would speak to the residential care manager! No! Not needed the care mum receives is outstanding and by no means do I want the message that I'm not happy with mum's care. After around 40 minutes the outcome was a referral to the community psychiatric person and possibly the consultant. First hurdle jumped so onto the next. The appointment for the nurse arrived swiftly as another resident had an appointment in a few days time. Very little to say here except a repeat performance of the previous encounter and an attempt to justify why we had heard from the NHS 8 months after diagnosis not in 3 months as promised. "We're very busy". I can honestly say I was even more frustrated and cross after this meeting The outcome was a referral back to the consultant to see if they can "restore" mum's sleep pattern to help her distress during the day. Can't say I have much faith in this as a remedy as many of the folks in the home hike around all night but certainly aren't as distressed as mum during the day. However at least this meeting had achieved an outcome of opening the door to actually see a consultant. So two appointments and 4 people later we are waiting...no wonder the NHS has no money!
 

SnowWhite

Registered User
Nov 18, 2016
699
0
My Mum is also very aware of her condition worsening. I don't think I'm much help to her to be honest but I do listen. She says thinks like "my poor old brain just won't do what I want it to." and she gets cross that she can't remember people I mention although she's better with faces.

I am sure I would be exactly the same as everyone this is happening to and it must be quite scary.
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
My wife also has the moments you describe. As well as Donepezil and Memantine for the Alzheimer's, she is on Pregabalin and Duloxetine for anxiety and depression. The drug combination has reduced her symptoms and certainly helped her to sleep very well. May be worth a chat with the Consultant and GP or even the CPN as I know my wife's CPN was very willing to discuss medication needs with the Consultant.
 

yak55

Registered User
Jun 15, 2015
616
0
Hi yak55, I'll let you know how I get on. So far we have had the appointment with The Elderly Care Mental Health. Three of them and 20 minutes late for 10.30am appointment. I felt as if they listened but I felt it was (in their words) "get it off your chest" meeting. I was just missing the "there, there" and a pat on the shoulder! At one point I was told that my stress levels were too high and they would speak to the residential care manager! No! Not needed the care mum receives is outstanding and by no means do I want the message that I'm not happy with mum's care. After around 40 minutes the outcome was a referral to the community psychiatric person and possibly the consultant. First hurdle jumped so onto the next. The appointment for the nurse arrived swiftly as another resident had an appointment in a few days time. Very little to say here except a repeat performance of the previous encounter and an attempt to justify why we had heard from the NHS 8 months after diagnosis not in 3 months as promised. "We're very busy". I can honestly say I was even more frustrated and cross after this meeting The outcome was a referral back to the consultant to see if they can "restore" mum's sleep pattern to help her distress during the day. Can't say I have much faith in this as a remedy as many of the folks in the home hike around all night but certainly aren't as distressed as mum during the day. However at least this meeting had achieved an outcome of opening the door to actually see a consultant. So two appointments and 4 people later we are waiting...no wonder the NHS has no money!
Wow, I have no faith in any of these so called text book experts. Unless you are living with it you have no idea and as for the patronising ums and ahhs grrrrrrrrrr
I am at breaking point right now. Everything mum has done today has wound me up and yes professionals I know it's not her fault!
All the dirty washing was folded and placed around her room.
I've just throne her shoes out the back because she keeps putting them on and taking them off.
She is shadowing me.
Crying.
Wandering.
Doesn't want to go to day care.
Didn't sleep last night and kept opening and shutting our door.
Moving stuff around.
Oh it sounds feeble but live with it and it's a killer.
My sister should have had mum today but didn't.
We have a house to clear as Dad died in August.
Our home is not the same and I'm fed up and feeling sorry for myself but I'll be ok in a minute,have to be don't we x
Good luck Yorkshire lass, sorry for the ramble
 

YorkshireLass

Registered User
Feb 15, 2017
222
0
Ilkley
Wow, I have no faith in any of these so called text book experts. Unless you are living with it you have no idea and as for the patronising ums and ahhs grrrrrrrrrr
I am at breaking point right now. Everything mum has done today has wound me up and yes professionals I know it's not her fault!
All the dirty washing was folded and placed around her room.
I've just throne her shoes out the back because she keeps putting them on and taking them off.
She is shadowing me.
Crying.
Wandering.
Doesn't want to go to day care.
Didn't sleep last night and kept opening and shutting our door.
Moving stuff around.
Oh it sounds feeble but live with it and it's a killer.
My sister should have had mum today but didn't.
We have a house to clear as Dad died in August.
Our home is not the same and I'm fed up and feeling sorry for myself but I'll be ok in a minute,have to be don't we x
Good luck Yorkshire lass, sorry for the ramble
Good evening, really hope things have settled down for you. Even though we know we have to continue to ride the roller coaster.Please don't apologise I struggled on for as long as I could gradually being consumed by the caring role. Eventually I moved in with mum at her house whilst my husband was preparing a room downstairs for mum at ours.Every avenue for support had been explored, Carers Resource, Social Services, private care agencies but the demon Alzheimer's was running faster than I could. Little family support was offered (sibling simply not prepared to "give up" his life to care or help me to have some life!). I was in tears most days and finally surrendered. Mum moved into residential care. I battle the guilt monster every single day and many times through the night too. Never did I imagine this would have to happen. I sit with mum every afternoon and even though the fees are paid in full I still feel and am responsible for her. The only sensible advice I can offer is try and get ahead of the game. Even though you might not even contemplate residential care take a look. If you find somewhere acceptable get on the waiting list. I had no idea that the "good" homes would have waiting lists (maybe because I'd never done this before). No one has to take the offer of a place when it is offered, just remain on the list. It's a safety net I didn't have and the folks running and working in many of these homes are fantastic, patient and totally understand. Angels! Take care of yourself and your husband xxx
 

yak55

Registered User
Jun 15, 2015
616
0
Good evening, really hope things have settled down for you. Even though we know we have to continue to ride the roller coaster.Please don't apologise I struggled on for as long as I could gradually being consumed by the caring role. Eventually I moved in with mum at her house whilst my husband was preparing a room downstairs for mum at ours.Every avenue for support had been explored, Carers Resource, Social Services, private care agencies but the demon Alzheimer's was running faster than I could. Little family support was offered (sibling simply not prepared to "give up" his life to care or help me to have some life!). I was in tears most days and finally surrendered. Mum moved into residential care. I battle the guilt monster every single day and many times through the night too. Never did I imagine this would have to happen. I sit with mum every afternoon and even though the fees are paid in full I still feel and am responsible for her. The only sensible advice I can offer is try and get ahead of the game. Even though you might not even contemplate residential care take a look. If you find somewhere acceptable get on the waiting list. I had no idea that the "good" homes would have waiting lists (maybe because I'd never done this before). No one has to take the offer of a place when it is offered, just remain on the list. It's a safety net I didn't have and the folks running and working in many of these homes are fantastic, patient and totally understand. Angels! Take care of yourself and your husband xxx
Thank you Yorkshire lass, that's a very sensible idea that I hadn't thought of, as like yourself, I couldn't ever imagine Mum being anywhere but with us but the struggle is great and Mum is changing rapidly although physically well.
I've just read your reply to my husband and he is going to take mum to day care at a nearby residential care home next week with a view to maybe becoming a resident in the future.
One thing we were just discussing and I wonder if you would be able to advise on your own experience, was, at a few homes we've looked at for day care apart from the one near us, had easy access and therefore easy exit!
My mum would be out of the door asap if we left it unlocked for a second.
Thanks for listening, Jackie x
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
One thing we were just discussing and I wonder if you would be able to advise on your own experience, was, at a few homes we've looked at for day care apart from the one near us, had easy access and therefore easy exit!
My mum would be out of the door asap if we left it unlocked for a second.

Yes, my mum would have been the same!
Not all care homes are the same - even the ones that say they cater for people with dementia will often only take people with early dementia. When mum went into a care home she went into a secure dedicated dementia unit. It think its very wise to find out about care homes before you need one - things can change very quickly in dementialand
 

YorkshireLass

Registered User
Feb 15, 2017
222
0
Ilkley
Thank you Yorkshire lass, that's a very sensible idea that I hadn't thought of, as like yourself, I couldn't ever imagine Mum being anywhere but with us but the struggle is great and Mum is changing rapidly although physically well.
I've just read your reply to my husband and he is going to take mum to day care at a nearby residential care home next week with a view to maybe becoming a resident in the future.
One thing we were just discussing and I wonder if you would be able to advise on your own experience, was, at a few homes we've looked at for day care apart from the one near us, had easy access and therefore easy exit!
My mum would be out of the door asap if we left it unlocked for a second.
Thanks for listening, Jackie x
Hi Jackie, I'm going to try and sequence the process I went through and the things that went through my mind
- I decided on an acceptable area distance wise for visiting mum for myself and my brother
- searched on the CQC report website (it allowed you to search by area and CQC rating)
- read the detail of the reports primarily looking at "Caring", "Responsive" and "Effective" sections
- made a list of homes that had "Good" rating or better ones that I liked the detailed reports and ones that took residents with dementia (most!)
- formed a shortlist of six and phoned to make arrangements to visit. Some gave a time and others said just turn up
- did the rounds and was totally honest about mum's current behaviour. Some said they couldn't meet mum's needs. Some just didn't feel right, one was chaotic (might just have been a bad day!)
- At this stage non had availability (most with waiting lists of 12 - 20) but one that I liked offered a room that would be available soon. They offered to come and assess mum at home the following week

The list now becomes messed up as the agreed assessment was cancelled the morning it was due and I was distraught as I really was at my wits end dealing with mum all day and getting up around 8 times a night. Eventually I was told it would be 4 - 5 weeks before there would be a room. In the meantime we contacted a residential home that we knew from a previous resident. I had discounted this home as it was residential and not nursing and at the time I believed I would probably need nursing eventually and wouldn't want to move mum.
We visited this home and that's exactly what it was a home from home. A large house, extended at the back reminding me of a lovely old seaside hotel. We talked to a senior carer and again total honesty (mum has AD and is blind and continually asks where she is). We discussed everything from day to day care to end of life care and the fact mum could stay here permanently and they would deal with each stage.An appointment was made to visit mum at home. She behaved exactly as described. We talked about daily routines, medication, what mum likes and dislikes, favourite foods, music, TV, radio, aids she has for her blindness...endless and all written down. I was impressed but a waiting list for a room - yes!
Thankfully I think it was our honesty, the avenues I had already tried, the difficult situation I was in, the bags under my eyes and the sad fact that another resident had just died that mum was offered a room quickly.
Unfortunately that was only the beginning. Sorting things for mum's transfer, sewing name tapes in clothes, trying to get her settled. No exaggeration it was dreadful. Following this was sorting mum's house for sale and all that entails alongside seeing her everyday.
I have to say at mum's care home I marvel everyday at the patience, kindness, concern of the carers (many in their 20's). The standard of cleanliness, lovely food, well planned activities and entertainment are exemplary. The lovely warm welcome every time I press the door buzzer and the quick update "mum has slept well", "mum is in a really good mood today". If it's not been a good night that's saved for later! This home has one entry exit door and it is locked with access via a key pad so no escaping and I have to ask for staff to let me out in case someone decides they fancy following me. Residents can and do go out for walks with a carer or with relatives or friends it's not a prison but it is secure. I have signed a Deprivation of Liberty Safeguards (DoLS) for mum so the home can make sure she is safe.
Hope I have covered things for you. Just say if there's anything else. It was all completely new to me and a journey I don't want to repeat anytime soon. Perhaps I should point out mum is self funding and that gives the freedom to choose what is best for her.
 

yak55

Registered User
Jun 15, 2015
616
0
Hi Jackie, I'm going to try and sequence the process I went through and the things that went through my mind
- I decided on an acceptable area distance wise for visiting mum for myself and my brother
- searched on the CQC report website (it allowed you to search by area and CQC rating)
- read the detail of the reports primarily looking at "Caring", "Responsive" and "Effective" sections
- made a list of homes that had "Good" rating or better ones that I liked the detailed reports and ones that took residents with dementia (most!)
- formed a shortlist of six and phoned to make arrangements to visit. Some gave a time and others said just turn up
- did the rounds and was totally honest about mum's current behaviour. Some said they couldn't meet mum's needs. Some just didn't feel right, one was chaotic (might just have been a bad day!)
- At this stage non had availability (most with waiting lists of 12 - 20) but one that I liked offered a room that would be available soon. They offered to come and assess mum at home the following week

The list now becomes messed up as the agreed assessment was cancelled the morning it was due and I was distraught as I really was at my wits end dealing with mum all day and getting up around 8 times a night. Eventually I was told it would be 4 - 5 weeks before there would be a room. In the meantime we contacted a residential home that we knew from a previous resident. I had discounted this home as it was residential and not nursing and at the time I believed I would probably need nursing eventually and wouldn't want to move mum.
We visited this home and that's exactly what it was a home from home. A large house, extended at the back reminding me of a lovely old seaside hotel. We talked to a senior carer and again total honesty (mum has AD and is blind and continually asks where she is). We discussed everything from day to day care to end of life care and the fact mum could stay here permanently and they would deal with each stage.An appointment was made to visit mum at home. She behaved exactly as described. We talked about daily routines, medication, what mum likes and dislikes, favourite foods, music, TV, radio, aids she has for her blindness...endless and all written down. I was impressed but a waiting list for a room - yes!
Thankfully I think it was our honesty, the avenues I had already tried, the difficult situation I was in, the bags under my eyes and the sad fact that another resident had just died that mum was offered a room quickly.
Unfortunately that was only the beginning. Sorting things for mum's transfer, sewing name tapes in clothes, trying to get her settled. No exaggeration it was dreadful. Following this was sorting mum's house for sale and all that entails alongside seeing her everyday.
I have to say at mum's care home I marvel everyday at the patience, kindness, concern of the carers (many in their 20's). The standard of cleanliness, lovely food, well planned activities and entertainment are exemplary. The lovely warm welcome every time I press the door buzzer and the quick update "mum has slept well", "mum is in a really good mood today". If it's not been a good night that's saved for later! This home has one entry exit door and it is locked with access via a key pad so no escaping and I have to ask for staff to let me out in case someone decides they fancy following me. Residents can and do go out for walks with a carer or with relatives or friends it's not a prison but it is secure. I have signed a Deprivation of Liberty Safeguards (DoLS) for mum so the home can make sure she is safe.
Hope I have covered things for you. Just say if there's anything else. It was all completely new to me and a journey I don't want to repeat anytime soon. Perhaps I should point out mum is self funding and that gives the freedom to choose what is best for her.
Thank you thank you, I will screen shot this post for reference Yorkshire lass.
So glad you found a good home for your mum
 

yak55

Registered User
Jun 15, 2015
616
0
Yes, my mum would have been the same!
Not all care homes are the same - even the ones that say they cater for people with dementia will often only take people with early dementia. When mum went into a care home she went into a secure dedicated dementia unit. It think its very wise to find out about care homes before you need one - things can change very quickly in dementialand
Yes canary, that's my worry re change and how quickly the illness progresses. It's such an uncertain journey
 

YorkshireLass

Registered User
Feb 15, 2017
222
0
Ilkley
Thank you thank you, I will screen shot this post for reference Yorkshire lass.
So glad you found a good home for your mum
No problem Jackie, please keep in touch. There are so many lovely homes out there with fantastic staff who really, really care and if you are a regular visitor sitting quietly it's reassuring to know that this is the norm.. It's not (and can't be) the same as looking after your mum in your own home but when the latter is impossible you have to be content with "it's as good as it can be". It can't be perfect but if you feel the bits that aren't as you'd like them aren't important in the scheme of things it's fine. It wasn't perfect when I was caring for mum at home as all too frequently from frustration I said things I shouldn't and regretted it later! As you said earlier "we know it's the disease not the person" but we are only human and 24/7 care takes it toll. In the last 8 months whilst mum has been in residential care never have I seen any member of staff be snappy or lose their patience with any resident. xxx
 

yak55

Registered User
Jun 15, 2015
616
0
No problem Jackie, please keep in touch. There are so many lovely homes out there with fantastic staff who really, really care and if you are a regular visitor sitting quietly it's reassuring to know that this is the norm.. It's not (and can't be) the same as looking after your mum in your own home but when the latter is impossible you have to be content with "it's as good as it can be". It can't be perfect but if you feel the bits that aren't as you'd like them aren't important in the scheme of things it's fine. It wasn't perfect when I was caring for mum at home as all too frequently from frustration I said things I shouldn't and regretted it later! As you said earlier "we know it's the disease not the person" but we are only human and 24/7 care takes it toll. In the last 8 months whilst mum has been in residential care never have I seen any member of staff be snappy or lose their patience with any resident. xxx
That’s reassuring to hear and you’re right, Little niggles with a home or day care are pointless stressing about as I too sometimes find myself saying something I feel guilty about later. But it’s so hard.
If I move from my seat now I know mum will follow! The only place I’m alone is in the bathroom take care x