Family at breaking point

[sparky29]

I am new to this forum. My mum has Alzheimers and frontal lobe dementia? After my dad apparently fell at home and sustained terrible injury to his neck(broken bones) recently I had to refuse to bring him home from hospital back to be with my mum. Neighbours had been hearing lots of arguments and yet when people visited on balance everything appeared ok. Recently they had become worse with mum saying dad is violent and she needs help to get away.
Whilst dad was in hospital my sister and I stayed with her 24/7 and shared hospital visits to dad daily. Her mood was so erratic and I actually felt scared at night as she just didn't sleep and would be walking about and yet other times would be my mum and cuddle and want to care for us. Mum has not accepted her diagnosis and wanted a second opinion. When it came to voluntary assessment she would not go.She has just been sectioned (2) and I have had phone calls from her blaming me and saying she would never forgive me and yet other times will ring and be worried about me and say she loves me and wants to get out cos she is scared.Feel my heart is breaking. Dad has since been discharged and it is apparent that there are not the resources to help our vulnerable elderly parents. I love both my parents dearly but a lot is expected of you from SS and MH and it can cause breakdown of family . My children also need me. I recently refused to bring dad home because mum was unable to care for him also it was not a safe environment to be in with a broken neck xx Feeling guilty and so ill with stress. The whole system of elderly care needs an overhaul desperately xx Wishing you all strength and comfort xxx

 

[Cazzita]

Hi Cazzita
Thank you very much for your kind words. Hopefully you may never get to this point. The one bit of advice I can now offer to anyone dealing with or caring for a person with dementia is to ask for help as soon as a diagnosis is confirmed even if you don’t think you need it at the time . If you struggle on without help for months or years as we have then it is much harder to get it at a later stage. Get yourself and the person you care for on the register with SS as soon as possible

Aw, thank you so much for that advice. Mum had her scan about a month ago and we have heard nothing at all so goodness knows how long it will even take to get a diagnosis. However, as soon as she has a diagnosis, I will be hunting them down until I get the help she needs! Thanks so much and who knows what lies arounnd the corner for any of us, very scary thought! xx

 

[sixy74]

Well guys our meeting with SS went ahead as planned , at first they insisted on sending Dad home with a care package of 4 daytime visits and 2 night time visits. However after listening to what we had to say regarding Dad’s condition and how things have been at home recently the Dr agreed with us that it would be unsafe to send Dad home and that Mum wouldn’t be able to cope during the night by herself. The Dr then pushed SS to give Dad 28 days in a care home , if Dad improves after that time they will re asses him and either send him home with a care package or leave him be . So finally we have got the outcome that we had hoped for although TBH right now it doesn’t feel like anything to celebrate, as at the end of the day I have had to make a decision I never thought I would have to, to put my lovely Dad into care.
Thank you to everyone who has helped me through the most horrendous week of my life and I will let you all know how things work out .

 

[Scouts girl]

My thoughts are with you sixy74 as I know how you are feeling. It is a heartbreaking decision to move someone you love into a care home and feel helpless that we just cannot continue to care for them at home. It was one of the worst decisions I had to make on the advice of the doctor as I couldn’t cope any more caring solely for my mum. Try and be assured that you have done everything you could for your dad but the time has come when he now needs, not wants, the specialised 24 hour care that we as Carers are unable to give. He will be safe and well cared for. I hope he settles well in his new environment and try and get some well deserved rest. Keep in touch to let us know how dad is doing.

 

[myss]

I've not been in the position you have @sixy74 but I agree with Scouts girl words in that you and your Mum have done your best to assist your dad and now it has come to the point where he needs specialised care. There's no more you both could have done.

It's so easy for me to say try not to worry but try not to worry, you and your Mum need to get some rest for yourselves now, especially as you don't know what might happen after this 28 days, so take this opportunity to do the things you could not do before. All the best xx

 

[yak55]

if you have read my previous posts you will know that we are currently waiting for SS to visit on Tuesday to discuss our options regarding respite care etc for Dad, however as I type Tuesday seems like a long way off.
We are now in a situation where Dad is unable to stand on his own, sit on his own , get in and out of bed on his own basically he requires help to do anything. This has all happened in such a small space of time, only a month ago he was sleeping upstairs , whilst a struggle he still managed it with our help. This morning Dad woke at 6am and had wet himself , Mum and myself couldn’t even manage to get him onto the end of the bed to change him, as although he is 82 he is still a dead weight, this is very frustrating for all of us including Dad who became aggressive and tried to throw his walking frame towards mum and then threatened to shoot himself with a gun, god knows where he will get that from. Anyway we managed to get him into the bed although not where he should be as we just couldn’t pull him up to the top, poor mums back is in agony with the constant pushing and pulling.
We will try our best to get him up and out of bed when he wakes up but it’s now becoming an impossible task, we have a bed.riser fitted and handles etc but they make no difference at all, the strength is there but for some reason the brain seems to shut down during the night and Dad just can’t move. I know there’s is nothing you guys can do so I apologise as there must be people in a worse situation than we are, I just need someone to rant to as I feel useless and can’t bear to see Dad like this and to watch Mum having to struggle like this at her age is horrible . I really do think a care home is the only option now unless SS can provide care through out the night but I don’t think that will be an option.
Have a lovely Sunday guys

I really hope you and your family get the help you need but experience tells me that nothing moves fast enough. Start looking at care homes if you can and put your dads name on the list, even if a room comes up and you change your mind they will just keep him on there but move him down so that makes sure he is on a list at least.
When we enquirer about nighttime care we were told the cost and it was just not feasible. We have paid for everything and arranged everything without any help from SS, GP, LWD and the like. Mum was in day care four days a week before going into a care home almost three weeks ago, she was on a list and it was a horrible feeling of dread knowing we could be waiting for weeks and months for a room to become available, now I think about it I hate that mum is there but she needed proper care, family can only give a certain amount of care however much they try. The homes have nurses and specialist carers, hoists to move a person safely etc. and more importantly of all for us was that if mum wandered around during the night, as was her way, there was always someone around to talk to her and give her a cup of tea, they were fresh and not tired.
I'll never get used to the idea or get over the guilt but I will learn to live with it in time as I've no other choice.
I wish you and yours all the luck in the world to get things sorted out quickly x

 

[kindred]

I am new to this forum. My mum has Alzheimers and frontal lobe dementia? After my dad apparently fell at home and sustained terrible injury to his neck(broken bones) recently I had to refuse to bring him home from hospital back to be with my mum. Neighbours had been hearing lots of arguments and yet when people visited on balance everything appeared ok. Recently they had become worse with mum saying dad is violent and she needs help to get away.
Whilst dad was in hospital my sister and I stayed with her 24/7 and shared hospital visits to dad daily. Her mood was so erratic and I actually felt scared at night as she just didn't sleep and would be walking about and yet other times would be my mum and cuddle and want to care for us. Mum has not accepted her diagnosis and wanted a second opinion. When it came to voluntary assessment she would not go.She has just been sectioned (2) and I have had phone calls from her blaming me and saying she would never forgive me and yet other times will ring and be worried about me and say she loves me and wants to get out cos she is scared.Feel my heart is breaking. Dad has since been discharged and it is apparent that there are not the resources to help our vulnerable elderly parents. I love both my parents dearly but a lot is expected of you from SS and MH and it can cause breakdown of family . My children also need me. I recently refused to bring dad home because mum was unable to care for him also it was not a safe environment to be in with a broken neck xx Feeling guilty and so ill with stress. The whole system of elderly care needs an overhaul desperately xx Wishing you all strength and comfort xxx

Good to hear from you, though sorry about what you went through. Such an ordeal. I had to go through an ordeal (OH had near fatal fall at home) and the only people who ever helped me were social workers at the hospital where OH was admitted. As you say an awful lot is expected of us, too much. Yes, the whole system is ghastly, I am sorry you had to go through this when you have a family who needs you. Understand about the stress, but you really really have done the best warmest,Kindred.

 

[Cazzita]

Good to hear from you, though sorry about what you went through. Such an ordeal. I had to go through an ordeal (OH had near fatal fall at home) and the only people who ever helped me were social workers at the hospital where OH was admitted. As you say an awful lot is expected of us, too much. Yes, the whole system is ghastly, I am sorry you had to go through this when you have a family who needs you. Understand about the stress, but you really really have done the best warmest,Kindred.

Awful that we all have to go through this ghastly system as you say. Do the politicians have any idea what it is really like going through this process and how little help there is? It all seems so unbelievable that in this day and age, that it is this hard, this costly, this damaging. What a world

 

[Cazzita]

Hi Cazzita
Thank you very much for your kind words. Hopefully you may never get to this point. The one bit of advice I can now offer to anyone dealing with or caring for a person with dementia is to ask for help as soon as a diagnosis is confirmed even if you don’t think you need it at the time . If you struggle on without help for months or years as we have then it is much harder to get it at a later stage. Get yourself and the person you care for on the register with SS as soon as possible

Thank you so much and I will do that xx

 

[sparky29]

Good to hear from you, though sorry about what you went through. Such an ordeal. I had to go through an ordeal (OH had near fatal fall at home) and the only people who ever helped me were social workers at the hospital where OH was admitted. As you say an awful lot is expected of us, too much. Yes, the whole system is ghastly, I am sorry you had to go through this when you have a family who needs you. Understand about the stress, but you really really have done the best warmest,Kindred.

Good to hear from you, though sorry about what you went through. Such an ordeal. I had to go through an ordeal (OH had near fatal fall at home) and the only people who ever helped me were social workers at the hospital where OH was admitted. As you say an awful lot is expected of us, too much. Yes, the whole system is ghastly, I am sorry you had to go through this when you have a family who needs you. Understand about the stress, but you really really have done the best warmest,Kindred.

Thank you Kindred x Feeling stronger today but worried about my mum and dad xxGod Bless xx

 

[sixy74]

Well Dad has been in hospital now for nearly 2 weeks and this week he moves to a care home for 28 days respite care , however I think he will probably end up staying there.
After spending so much time with Dad for the past year I am now really missing him and fiind it strange having so much time to myself again . How did you guys cope with these emotions when you faced this situation.

 

[garfield3]

Well guys our meeting with SS went ahead as planned , at first th

ey insisted on sending Dad home with a care package of 4 daytime visits and 2 night time visits. However after listening to what we had to say regarding Dad’s condition and how things have been at home recently the Dr agreed with us that it would be unsafe to send Dad home and that Mum wouldn’t be able to cope during the night by herself. The Dr then pushed SS to give Dad 28 days in a care home , if Dad improves after that time they will re asses him and either send him home with a care package or leave him be . So finally we have got the outcome that we had hoped for although TBH right now it doesn’t feel like anything to celebrate, as at the end of the day I have had to make a decision I never thought I would have to, to put my lovely Dad into care.
Thank you to everyone who has helped me through the most horrendous week of my life and I will let you all know how things work out .

That is good news. I know how guilty, worried, and felt it was the end when it happened to mum. She s still here though,3.5 yrs on and I know she is being cared for without the worry of dad. All the best.

 

[canary]

I hope the move goes well, @sixy74
It will take you both time to adjust. You will find that you will still be caring for him - just in a different way.

 

[CanadaDi]

Sorry you had such a difficult time with the system getting the help you needed. I know the incredible stress we went through getting my Mom into long term care in Canada. The bureaucracy, because of strained budgets and over capacity, is rigged against the families needing help. I fear it will only get worse with our aging populations. On the plus side, you now know your Dad is being well cared for, and you and your Mom can regain your health and strength. Your being well is the best thing you can do for your parents. I hope that it all works out. Know that you are doing your best for your Mom and Dad. Here is a hug from Canada ()

 

[sixy74]

Guys I just had to update you on what’s happened this week. We were given a choice of two care homes to choose from for Dad’s respite , the first place has failed all of its inspections and the second place simply just refused Dad due to his night time aggression. Not happy with the first place I tried to find another care home myself to no avail, as none would asses him in person and most of the others all had a huge top up fee that we simply couldn’t afford. Anyway I finally found a lovely place this morning only 5 minutes away from where I live, the manager offered to asses dad in person and assured me his aggression wasn’t a problem, however they wouldn’t have a bed available for 2 weeks. I explained this to SS and was told there is no way that they would allow dad to stay in hospital for a further 2 weeks , then out of nowhere I was told it’s the original care home or none at all as they would withdraw the funding that was in place as I had refused all of their offers, I hadn’t refused any offer at all it was the care homes who had refused to accept my Dad but they don’t see it that way .So we have been forced to take their original offer as keeping him in hospital any longer is just making him deteriorate even further . It’s such a shame as the care home I have found today is perfect . If Dad does not settle in the care home forced upon us do you guys think I have a chance of getting him moved as our Social Worker told me that I would have to convince them that the current place isn’t suitable

 

[sixy74]

Well Dad finally moved into his care home yesterday and it seemed to go well. I visited him about an hour after he arrived to find him sat in front of the TV in the main lounge watching the horse racing, he hasn’t seen a TV for 3 weeks so a bit of interest for him. The staff all seem really nice however I find it difficult watching them looking after him as I feel it should be me doing it, it’s hard to just suddenly stop after a couple of years 24/7, last night I tossed and turned worrying about how he would react to sleeping alone for the first time in probably 50 years, I woke this morning with a knot in my stomach. I know I shouldn’t feel guilty but I feel so sad that he is now separated from his family, we will of course visit daily and hopefully take him out in a wheel chair for walks or pub lunches , but as you know it’s just not the same , the house feels empty without him yet only a few weeks ago we were.at breaking point and knew something had to give

 

[RedLou]

Don't feel guilty. You are doing this for your mum as well as seeking for him to have 24-hour care. You are fulfilling your promise to look after your mum. Keep reminding yourself and pat yourself on the back, you've done a stellar job.

 

[sixy74]

Don't feel guilty. You are doing this for your mum as well as seeking for him to have 24-hour care. You are fulfilling your promise to look after your mum. Keep reminding yourself and pat yourself on the back, you've done a stellar job.

Thanks RedLou for your kind words and encouragement

 

[canary]

You want him back, but not the way he is now. No need for guilt, its just sad that these things have to happen, but as you said, you were all at breaking point.
It will take all of you a while to adjust

 

[YorkshireLass]

Well Dad finally moved into his care home yesterday and it seemed to go well. I visited him about an hour after he arrived to find him sat in front of the TV in the main lounge watching the horse racing, he hasn’t seen a TV for 3 weeks so a bit of interest for him. The staff all seem really nice however I find it difficult watching them looking after him as I feel it should be me doing it, it’s hard to just suddenly stop after a couple of years 24/7, last night I tossed and turned worrying about how he would react to sleeping alone for the first time in probably 50 years, I woke this morning with a knot in my stomach. I know I shouldn’t feel guilty but I feel so sad that he is now separated from his family, we will of course visit daily and hopefully take him out in a wheel chair for walks or pub lunches , but as you know it’s just not the same , the house feels empty without him yet only a few weeks ago we were.at breaking point and knew something had to give

So glad sixy74 you have finally found support. It's certainly not easy but you are over the worst day. When I look back i really don't know how I faced it but I did, I had to. You will get used to the feelings when you see someone else caring for your dad. I'm not sure if the feelings of guilt get less no matter how many times folks tell you "you've done your best, you couldn't do any more" but I've found you get used to it. I visit and do whatever is needed whether that is holding mum's hand, talking to her, calming her down or, when she is asleep, checking her room to make sure everything is OK. It all reminds me I am still needed but in a different way. Sending a big hug xxxx