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Can’t cope anymore

LolaG1

Registered User
Jul 8, 2019
14
Hi everyone,

My Dad was diagnosed with Mid stage Alzheimer’s in 2018. I have been caring for him since 2015 and he lives with me, my husband and my 4 year old son. He was diagnosed quite late because he is also an alcoholic and we just thought it was the drink that was affecting him. When he was diagnosed the consultant added into his notes that he was a life long drinker and that if he stopped drinking completely it would be more detrimental to his health. He only drinks lager now but he is drinking daily.
The last three weeks have been unbearable and he has been getting increasingly worse. He thinks there are people in the house and we have had to remove all the mirrors because he keeps shouting at the man in them. The other day he frightened my 4 year old son and I have now come to the conclusion that being a good daughter is making me a bad mum. Dad can’t feed or dress himself anymore and he is frightened of taking a bath. He can’t go out unaided and he spends a lot of time crying. We also have a cat who he looks for in the house at least 3 times an hour and if he can’t find him it sends him into a blind panic - this happens around 2/3 times a day now. He also emptied the cats litter tray into his hand and carried it around the house (Usually I make sure I get there first but sometimes the cat is sneaky) He also pours dry cat food all around the house and covers his entire bedroom carpet Yesterday I think I reached breaking point and have requested a care assessment from my local council. I just can’t do this anymore. After we had spent an hour removing his wardrobe doors (mirrored) he told me he was going to shoot “that bloke” in the mirror. I wasn’t sure what he meant until he showed me a very convincing looking pellet gun that he had hidden under his chair cushion. I can’t have that sort of behaviour with a 4 year old around. It’s getting harder to shield my son and he is becoming very wary of grandad.
I’ve never sought outside help before as he is so very paranoid that we can’t have strangers in the house. He is even starting to get agitated when people walk past the house and we can’t get him away from the windows. I feel really guilty about not being able to do more for him and feel like I’m giving up but I’m at my wits end. I’ve spoken to my younger brother and sister (18 & 20) and they have both basically told me that I’ve given up enough of my life already and that I need to do what I need to do so I have their support.
I am concerned that if he goes into a home then he will die because of the lack of alcohol intake but I’m actually quite scared now and I’m concerned he’s a danger to us and to himself.
I know this is probably the worst time to be looking at outside care but I don’t feel I have a choice. 😢
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,853
Nottinghamshire
You can't carry on like this @LolaG1 . I can tell how much you love your dad but you must consider the needs of your child first. Your home is not safe for him while your dad is living there and I think you are right to be scared.

I think you should call the council again and ask for an urgent assessment as you feel your dad is a danger to everyone including himself while he remains in your home. Do not feel guilty it's time for professional help. Any care home should follow your dad's GPs advice and I know some of them do allow alcohol.
 

Whisperer

Registered User
Mar 27, 2017
213
Dear LolaG1
I have read your comments and felt the need to reply. You seem caught in your own thoughts between an emotional rock and a hard place. Deep down I think you fear being judged and found wanting, if I am correctly reading between the lines of your comments. Perhaps a stranger giving you back a brief summary will help you? Please understand I am trying to help you, no criticism intended and praise for how far you have come down the caring road to help your dad.

1) You took your dad in to care for him. A decision based on love and compassion. No one can fault such thoughts in a human being. Many would not have done so. Caring for a person with Dementia in a family home containing children will be very hard, in some ways impossible or time limited. Add alcohol to the mix and matters are made even more complicated.
2) You need to balance love for your dad with the points you have made. A four year old son exposed to I daily anger outbursts, already wary around grandad. A pellet gun hidden away under a cushion. Could your son have stumbled upon it on his own and started to play with “his new toy”? Was it loaded? Your siblings are telling you they will support you in making any decision you have to. You are “quite scared” and naturally so. This situation has gradually developed and perhaps I suggest you need to step back and just ask how sustainable is this situation, in your heart you know the answer. To acknowledge this is not failure on your part, you have tried your best for your dad, but deep down you know this cannot go on. In my opinion you have done really well for the period you have cared for your dad, been a wonderful daughter, you have no reason to judge yourself in any way negatively. As you say yourself you have no choice.

You have done your best for your dad. You are now paying too high a price to do so and so is your husband and crucially your young son. Agreed lockdown makes things harder but in your heart I think you know you have no choice. If it helps a stranger saying it you have to think of your family and not your dad. You have done all you can, no one will regard you as failing here, you are just accepting what the situation is and acting as well as you can.

Be clear if you do not act on what you know to be the required action you will regret that decision. Look at your little lad playing with his toys. He deserves a loving and safe upbringing, a home where he does not experience anxiety, ultimately fear, where mirrors on the wall are normal, where pellet guns are not hidden under cushions. Dementia as it develops is never a great mix With young children. Adults struggle to understand and cope with it, a young child will never fully appreciate the situation but it will impact on them.

You fear what may happen to your dad if he goes into care. But what will happen to you and your family if he stays. Your siblings are being supportive and that you have done enough for your dad. No one with any understanding of your position is going to judge and find you wanting. May I gently suggest the only person doing any judging here is yourself. That is wrong. You have helped your dad all you can now you must think of your family.

I hope things go well in the near future. Have you been in contact with local social services and explained the current situation? You have already paid a high price to care for your dad. It is time to let go, understanding no matter what happens with your dad it is not your fault. Without you he would have gone into care earlier. The price of caring for him has just got to high for you and all your family. Good luck and I hope my words are accepted in good faith and understood to only be supportive in this difficult time for you and your family.
 

Rosettastone57

Registered User
Oct 27, 2016
1,373
I agree with everything that has been said by other posters. This is a child protection issue as well. Please please contact social services. Your father needs to be supervised 24/7 by professionals. It's time to let go.

Edited....I think that it is illegal for a air rifle owner to allow unauthorised access to an under 18 year old to an air gun, if that is the weapon you're describing . The gun should be locked away. Different rules apply in Scotland.
 
Last edited:

Palerider

Registered User
Aug 9, 2015
2,007
North West
Hello @LolaG1

Just read your story. My dad was a heavy drinker and was never easy to be around when he'd had a drink but very different when sober. It made people weary of him and nervous because we never knew how he would be and no doubt this is affecting all of you especially your young son. Add into the mix dementia and it must be doubly difficult to exist with any ease.

As others have said you can't continue like this and neither can your dad. I wouldn't worry too much about him not drinking if he goes into care, there are things that can be done to get him off alcohol safely and they will have to implement this given the amount he is drinking albeit lager. The other thing is that dementia and alcohol don't mix very well either, so best to come of it altogether if he has an addiction to alcohol -you will need to speak to his GP about this because he will need their help to detox.

Please don't blame yourself or feel that you have failed, even with alcohol out of the picture situations get more and more difficult to cope with in the world of dementia. Sometimes doing our best means making difficult decisions and taking action we would rather avoid but I think you have answered what the way forward is already sanctioned by your siblings. Let us know how you get on.
 

Banjomansmate

Registered User
Jan 13, 2019
2,198
Dorset
Look at this from the outside - you have a friend with a young child sharing a house with a mentally unstable older person who hides a pellet gun under the cushion of a chair, what do you think that child’s mother should do?
 

canary

Registered User
Feb 25, 2014
13,646
South coast
I read your post and I think you have done everything you can for your dad and have acted as a loving supportive daughter. But when I got to the bit about the pellet gun hidden under a cushion, the hairs stuck up on the back of my neck. Was it loaded? Could he have fired it? Possibly fired it at someone in the house mistaking them for the bloke he wants to shoot? And could that have included your son? Could your son have found it and "played" with it?

Youve got to tell SS about the gun. It is truly a safeguarding issue. As much as you love your dad, he has become a risk to the family now.

Do not worry about a care home. When mum moved to her care home there was another resident there who was obviously an alcoholic and the care home allowed alcohol to be given every day - strictly supervised and overseen, so they couldnt get any more. The home may also have assisted with detoxing, but I dont know about that. The main thing is, though, that a care home will keep both your dad and the rest of the family safe.
 

LolaG1

Registered User
Jul 8, 2019
14
Thank you everyone for your responses. You’ve all put my mind at ease that I’m doing the right thing here. There really is wonderful support on this forum. I’ve contacted social services again today and told them about yesterday and they are seeking outside advice and will get back to me today. I will update the situation as I get more information. It’s a really hard situation and choosing between a child and a child like parent has been tough but my son and his safety have to come first.
Thank you all again for taking the time to read and reply.
 

Whisperer

Registered User
Mar 27, 2017
213
Thank you everyone for your responses. You’ve all put my mind at ease that I’m doing the right thing here. There really is wonderful support on this forum. I’ve contacted social services again today and told them about yesterday and they are seeking outside advice and will get back to me today. I will update the situation as I get more information. It’s a really hard situation and choosing between a child and a child like parent has been tough but my son and his safety have to come first.
Thank you all again for taking the time to read and reply.
Hello again

I am glad to hear the action you have taken. Sometimes when torn emotionally hearing views from outsiders helps to put things into perspective. Reassurance you are doing the right thing, which can be hard to do sometimes in life. As you say your son comes first, but also you and your husband. Please do advise the outcome of social services getting back to you. Always remember when your dad is getting professional help in a care setting you perhaps can go back to just being a loving daughter, not an exhausted caring one. Best wishes.
 

LHS

Registered User
Oct 5, 2018
72
Where a loved one has lost mental capacity and presents risks to themselves and to others, we all have to make really tough choices in their best interests and also take account of other affected family too. I think you have done the right thing in asking for external assistsnce.
 

katydid

Registered User
Oct 23, 2018
58
Thank you everyone for your responses. You’ve all put my mind at ease that I’m doing the right thing here. There really is wonderful support on this forum. I’ve contacted social services again today and told them about yesterday and they are seeking outside advice and will get back to me today. I will update the situation as I get more information. It’s a really hard situation and choosing between a child and a child like parent has been tough but my son and his safety have to come first.
Thank you all again for taking the time to read and reply.
I cared for my husband for about 6 years and went slowly down the path of getting to that point of need
I think it is really important that you continue to pursue SS and your GP . For help
It is a very difficult task to acquire the correct care and I am sure you will realise that whatever is provided, you will feel it is not good enough to make you feel happy about it
After carers in the home, and a try at day care(which he hated, and which I now regret very much) Len finally entered a nursing home
Broken hearted after 51 years of marriage, I think the only thing that saved me from despair was the Manager, saying. That. Remember he “
forgets as soon as you are gone”
Checking proved absolutely correct. Hiding behind the door saw him enjoying a cup of tea and relaxing
This a long spiel, but I just wanted to let you know the hardest thing is not always the wrong thing
My husband died 1 month ago and now I can grieve .
 

LolaG1

Registered User
Jul 8, 2019
14
I cared for my husband for about 6 years and went slowly down the path of getting to that point of need
I think it is really important that you continue to pursue SS and your GP . For help
It is a very difficult task to acquire the correct care and I am sure you will realise that whatever is provided, you will feel it is not good enough to make you feel happy about it
After carers in the home, and a try at day care(which he hated, and which I now regret very much) Len finally entered a nursing home
Broken hearted after 51 years of marriage, I think the only thing that saved me from despair was the Manager, saying. That. Remember he “
forgets as soon as you are gone”
Checking proved absolutely correct. Hiding behind the door saw him enjoying a cup of tea and relaxing
This a long spiel, but I just wanted to let you know the hardest thing is not always the wrong thing
My husband died 1 month ago and now I can grieve .
I’m sorry for your loss and you’re not wrong when you say getting help is difficult. 🙁
 

LolaG1

Registered User
Jul 8, 2019
14
Update: I contacted Adult social services on Tuesday as I mentioned above and they said they would get back to me the same day. On Wednesday morning my Fathers GP surgery called me as SS had called to tell them about my father brandishing a firearm. I explained it is not a real gun. The doctor that called me was lovely and said she would get the mental health team to contact me about anti psychosis meds. I haven’t heard from them yet (it’s now Friday). She also wanted me to get a urine sample to check for a uti which i have not been able to do so far as dad is quite distressed this week.
The same day I also had a call from child social services because the adult team had referred it. They had told me on the Tuesday they were going to do this and I was honestly sitting at the window all afternoon waiting for someone to come and take away my son. Child services said that because I called in voluntarily and my son is safe and I’m trying to get help; they had nothing to investigate and didn’t think it should have been referred. I burst into tears and told the lady I regretted saying anything to anyone now and she was lovely and told me to call her department back if adult social don’t call me.
Adult social services called me yesterday (Thursday) and asked me more or less the same questions I had already answered at the first point of contact. The man then wanted to speak to my father who not only struggled with the whole conversation and made no sense; he then spent the afternoon upset and distressed because he thought the man was coming to the house. When he spoke to me again, he agreed that yes my father has probably gone past the point of carers coming to the house and he needed to refer me to somewhere else. So I’m waiting for a call again. I’m glad he’s in the system now and I knew it wasn’t going to be easy but it’s causing quite a bit of distress my end. Again I will update if I hear more because although different councils have different processes, I feel the system will be quite similar throughout the UK.
Thank you again for taking the time to read my post. 💚
 

canary

Registered User
Feb 25, 2014
13,646
South coast
Sometimes official organisations can be so heavy handed [sigh]
Im sorry it was so stressful, but something had to be done and it sounds like things are now going along the right pathway.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,853
Nottinghamshire
Let me put your mind at rest about child social services - the very last thing they want to do is take a child away from their parents so please don’t worry about that. It is really stressful getting help in a crisis I went through it with my dad (different crisis) but it sounds as though you now have people on your side who can help you through this.

You'll be able to breath a sigh of relief when everything’s in place.

Have you thought what you’d like to happen?
 

LolaG1

Registered User
Jul 8, 2019
14
UPDATE: Hi everyone. I’m sorry it’s been so long, I know I promised to update you all but it’s been so difficult.

My Fathers GP was able to prescribe antibiotics over the phone without a urine sample but after three days he was still in pain and the confusion was getting worse. They advised me on 1st June to call an ambulance for him. He was taken to hospital and diagnosed with a chest infection. The second day I had a call from a doctor who told me he had tried to attack a member of staff in the A&E department. He was moved to the dementia ward to recover from the chest infection and the discharge team told me he would be rehomed in a care home as he needed 24 hour care and he wasn’t safe to be at home with us. Apparently my boroughs social services team were not moving fast enough so he was transferred to a care home in a different borough about half an hour away. This was on the 22nd June and I still hadn’t seen him at this point. He was there for one week and I had calls about him sexually assaulting other residents and attacking another resident so badly they were considering reporting it to the police.

After a long chat with the care home manager we discovered they had not been told he was violent and aggressive when they took him and he hadn’t been given the anti psychotic meds the hospital had prescribed him when he left. They forgot. She was lovely and called the mental health team who took him to another hospital. They decided to do an MRI as they weren’t convinced the previous hospital had checked him properly. It turns out he also has a bleed on the brain that is contained, so they immediately stopped the blood thinners he was on for his stroke in 2013. He was moved to another care home on the 17th July - I didn’t have confirmation of this until the 21st. We still don’t have a named social worker and Adult Services have not been in touch. He is still around 40 minutes away and I had a bit of trouble speaking to anyone at this home and getting any information. They told me he had arrived with no shoes on though and then couldn’t even arrange hospital transport to collect his belongings from the previous home. Luckily it was a 10 minute drive and the previous care home manager was kind enough to take his things for him. For this I will always be so grateful, but she felt so sorry for me and dad and how let down we have been by the system. She said that she had never seen Alzheimer’s this bad, especially in someone of only 65 and that it was disgusting we hadn’t had any help from any mental health professionals when he was diagnosed.

I sent a very long email to adult social services detailing my whole experience and asking for help with his benefits and home fees etc as no one had contacted me about any of it. They didn’t reply and the young man that answers their main number cut me off twice. I finally had a reply after quoting their response times on their own website to tell me that the mental health team had my email and were dealing with the case. This was a week ago now and I’ve still not heard anything. His universal credit is being stopped soon due to his age and I’ve been unable to apply for his state pension as they need to speak to him or run a facial verification.

I was able to see my Dad for the first time on the 15th August and unfortunately he no longer remembers me. It was a horrible experience as I had to go alone with my husband sitting in the car outside. Dad seemed very drugged up on meds but the staff member I spoke to was lovely and said he seemed settled and was a lot less aggressive. Still taking his clothes off around female staff though. I also heard him try and communicate with another couple of residents so he seems blissfully unaware.

I apologise for not updating everyone sooner but I also lost my Nan during this period so it’s not been easy. I’m devastated that I’ve now lost my dad and he doesn’t know me as it’s been so long. It’s such an awful illness and some days I feel like I’m grieving when I shouldn’t be because he is still alive, just not well. Thank you for reading. X
 

Starting on a journey

Registered User
Jul 9, 2019
439
Oh bless, I don’t know what to say.
You have been through so much as a loving daughter, you can now concentrate on being a mum!!
Others will I am sure offer advice about homes etc, I am not experienced in this, but I wanted to say that if you were my daughter I would be very proud of you for looking after dad as long as you did.
 

canary

Registered User
Feb 25, 2014
13,646
South coast
Oh my goodness @LolaG1 , such a roller coaster. No wonder that you havent had time to post an update. Thank you for doing so, though.

Im sorry that your dad has got to the stage of not recognising you. It often, unfortunately, comes soon after not recognising themselves in the mirror. Yes, you are grieving for your dad. He is here, yet he is not here - its called anticipatory or ambiguous grief and on top of losing your nan too, it must be hard.

It sounds to me as though the care home is dealing with him as well as they can. It is very difficult to place someone with violent or sexual delusions and it often involves high dosages of anti-psychotics. If he is settled, a lot less aggressive and well looked after, then Im sad to say that this is probably the best you can hope for. Such a horrid disease.
xxx
 

Woo2

Registered User
Apr 30, 2019
2,775
South East
Goodness what a lot you have been through , the system is a complete failure a lot of the time and you have been badly let down. Sending you condolences on the loss of your nan. Take care of yourself .
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,853
Nottinghamshire
Thank you for the update @LolaG1 . Things sound very tough for you at the moment and you’ve been badly let down by the system . It’s a horrible disease and especially in someone so young. You’ve done the very best you could for your dad and your son.

I’m sorry to read about your nan too, my condolences.