My life.

woof woof

woof woof

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Alan
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I look after someone who's drifting into Alzheimer's. Sometimes in more or less reality and then with spells of confusion in which they live a completely different life, sometimes bouts of extreme distress and anxiety, sometimes aggression and anger. They say the same things over and over again, get distressed over the most trivial tasks. All you'd expect from this. This drift from reality to confusion to anxiety to anger and aggressiveness happens multiple times a day and can be very upsetting. Sometimes they're themselves and that's just... wonderful.

I do my best but it's hard to cope. I have two sisters, ones a nurse and lives next door. In the past I've asked for help. What I'd like is for one of them to give me one day a fortnight so that me and my wife can go out and not worry what's happing at home and what we're going to walk back into. I know with c19 things are difficult but when this is over we'd like to go out maybe 10am to 4 or 5pm once a week. Maybe go for a walk at the seaside and have a meal out and be back in time for sis to go home. All they'd have to do is sit here, make cups of tea and chat. I'll do everything else as I do now. If each gives a day a fortnight that's one day a week we could have out.

The last time I asked it all ended in a massive row and the sisters not speaking. Yesterday I just had a melt down as I just couldn't cope and I asked for help again and guess what? Massive family row that ended with one sister hanging up on the other and vowing to never speak to her again. The other then came to see me but didn't say anything... so I asked for one day a fortnight from each of them, result? Excuses and anger and upset and all her problems and her final words as she stormed out were "I don't care about you."

Left to my sisters our relative would be in a home PDQ but in my experience homes aren't nice places, we have had bad experiences of homes with another family member. Personally I'd rather die than go through that so it's not an option I'd even begin to think about for any loved one.

I've done this for years but it's hard to cope sometimes and I have issues of my own now. I've struggled with depression and stress for decades plus IBS and other stress and / or anxiety related things, numbness, tingling's, I did collapse during one especially upsetting episode. I've been honest with my sisters, it's me who needs help now and my hope is/was that they'd give me and Mrs WW the chance to go out one day a week. That doesn't seem too much to ask. Seems it is. So, business as usual.

I could go to the doctor but I'm worried about the consequences, thought about the Samaritans... I don't know. So, a post here is my therapy. I'll have a cup of tea and try my best.

Anyone else going through this?
 
I can only try to empathise with you as thankfully never had to go through that stress.

In the absence of your siblings coming to some sort of mutual agreement/understanding with you & your wife.....can I suggest you reach out to, what I perceive as other services who might offer assistance/guidance/support:-

Age Concern/Age UK
The Alzheimer's Society
......no doubt others???
Edit ~ was the relative ever in the military? If so try the Royal British Legion?

To discuss some respite care/relief days "off" for you. The very real need for carers to have that respite time I think is widely recognised.

All the best to you, your wife and your relative.

PS the last time I sat in the GP surgery I recall a banner poster aimed at carers and that if they needed help to please make contact and ask for such support.
 
My father in law suffered in much the same way as the relative you are caring for. His wife soldiered on saying she could cope but eventually she had to admit defeat and get carers to assist. Part of her care package included 'respite' care, where a sitter came into her home for a few hours several times a week to look after my father in law, allowing her to have a bit of normality in her life. I think the respite care saved her life. Sadly they are both no longer with us, so I cannot say who provided the respite care.
 
I haven't been through anything like this Alan, about the only thing I can say is that you can't choose your family, but you can choose your friends.

Is there someone else who could come and sit for a day a week so you could get a break? I'm thinking of some form of charity/social care organisation, not sure what else to suggest really but there must be someone out there!

Maybe you need to actually tell your selfish sisters how bad it really is too, easy for me to say I know, sorry!
 
My wife and I had a similar situation with her Mum (Parkinsons) after her Dad died. As said above, Age UK is a good place to start. They can/will advise where to start looking for help with care/respite/any funding available. They helped us a huge amount.
 
The thing is that they get very anxious and aggressive when I try to talk about getting some help in, even my sisters. Sometimes it's all sweetness and light while they're here then the second they're gone it's "Don't you ever get them here again." Seems happiest when I sit here 24/7. Then there's the more physical needs, the cleaning and dressing and washing and the fear of falls and just getting them up again when they've had a fall.

I may calm down and just get on with it but sometimes like now it's just hard to see any way forward. I've tried the argument that they need to spend time here with their parent and that didn't work. This time I've said it's me that need help and that hasn't worked in fact it's made things worse as I don't think we'll see or hear her next door for a very long time. They'll both appear at the funeral and will reading no doubt. Says cynical me. That parting shot, "I don't care about you." will stay with me for a while. I don't know if I'm angry or disappointed.
 
Tigger.ufo said:
Maybe you need to actually tell your selfish sisters how bad it really is too, easy for me to say I know, sorry!
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I've tried. When they're here I think the novelty helps so they haven't really seen the day to day reality. I have tried telling them the effect this is having on me, one is sympathetic and says all the right things and the other doesn't care. The result is the same. It's left to me.
 
If your sisters are so intransigent to be so unwilling to support you, then so be it!!!! I will not say on a public forum how 'annoyed for you' that makes me!

I can appreciate your reluctance to involve strangers.......because of the potential to trigger distress in your relative.... .but the folks that you reach out to will be experienced and sensitive to your concerns and the ways that the sufferer can behave/react ~ no doubt you are not alone in what you are going through. It surely cannot hurt to start 'a conversation' to explore just what these/those organisations can do to support you.
 
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Alan

I know we have crossed swords in the past and you think I'm an annoying little **** but I do sympathise with you in this situation. Often in these situations the well-being of the carer gets overlooked, and they struggle on. Ultimately this doesn't work as you will end up unwell and incapable of caring out effectively the carer duties.

If there is no help from immediate family members (even if they live next door!) then you have to look elsewhere, and that means either charity organisations (as suggested by @Box Brownie, who in the above post is talking a lot of sense) or some form of private nurse/carer cover. You need time off from this (respite) to enable you to effectively care at the other times. Your time to yourself (with your wife) must not been seen as a failure on your part.

Also you need to get to a doctor to discuss depression/anxiety (if you haven't already), to do what you are doing you need to be in the best possible mental place, and as above your health is paramount.

Make some calls on Monday (tomorrow), don't delay, these calls are inevitable, the sooner that it happens the better it will be and your quality of life will improve.
 
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woof woof said:
I've tried. When they're here I think the novelty helps so they haven't really seen the day to day reality. I have tried telling them the effect this is having on me, one is sympathetic and says all the right things and the other doesn't care. The result is the same. It's left to me.
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They are not listening, either of them.

What excuses do they give for not helping? Especially if one actually lives next door. Being sympathetic means nothing if you are not willing to help.

You need to really look after yourself too ... if you become unable to cope then who will look after your relative?
 
You need some help.

I know it is not easy, my wife has had Alzheimers since 2014.
 
Reasons she can't help "I have my own problems..." lists them, "I can't give up work" (I never asked her to and she only works 3 days a week) "and lose my house / can't afford this and that etc." She had a very difficult husband and to be honest the best explanation I can think of is she's now like him.
 
Sorry to read your sad tale. I have been in a similar situation to yours but with the support your not getting.
My case was my wife with cancer I thought I could handle all the problems, but no I had to talk to a local charity and found that they not only said yes we will help but offered overnight help also. Did take up this offer on 4 nights help in total. They also was able to talk to our GP and get drugs needed that I didn't know about that the district nurses had to administer.
Have a word with your local / national societies they can help in many ways. I did have support from my 2 daughters also that was a big help. Sadly my wife passed away 3 rd Jan 21.
Hope that this will inspire you to seek help from resources that are out there.


All the best Trevor
 
I'm really sorry to see you going through this Alan, my mother has Alzheimers so last year I was doing as much as I could for mum and as I was in the Bubble it was fine even with three carers every day going in. The stress of it all got very high indeed for me and my mental health was taking a bad toll on my health. Sadly I had to pull back and have not seen my mother for a long time, yes it's great to talk on the phone but I also want to be there and help. The carers call me to let me know how it is all going plus talking to mum too, and it was actually mum that told me to start trying to look after my self and we can all get together later when things get better. Even though it is East Sussex the carers are great, they are called My Life and thinking about it too they have saved mine.
 
Been through the scenario you outlined - except instead of sisters I had brothers who would not help.
After some very careful investigations we decided on a care home. My mom was actually a lot better cared for there and in her more lucid moments was organising an escape committee with fellow residents - she truly appeared to being enjoying herself having fellow residents to talk to and was very well cared for in the steadily increasing number of low moments.
Eventually she got a lot worse and I was so relieved that she had settled into the care home routine well before this happened. Eventually she ended up being unable to speak or walk and as a result the anger and conflict situations totally disappeared. She eventually passed away and the care she received was much better than I could offer.
I think some people resist care homes because they feel the care they give is not as good as what a good care at home can deliver - this may be true in the first stages of the disease but not in the middle and later stages. By being in care well before the final stages of the disease allows the person to form friendships with fellow residents and staff - very important before the struggle that comes in the final stages.
Of course the biggest problem is with your own guilt that you were not up to the task - I have no solution for that other than it’s not warranted.
I hope that helps
James
 
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jbw said:
Of course the biggest problem is with your own guilt that you were not up to the task - I have no solution for that other than it’s not warranted.
I hope that helps
James
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Yup. That's it. There's massive guilt that I can't cope and of course that would increase if our parent had to go into a home. My auntie was in one for several years and it was just awful but thankfully she didn't seem to notice and actually liked the place. She had a brain injury from early adulthood though and even when at her best wasn't exactly in the same world we're in. What we saw there though did affect us even if it passed poor auntie by.
 
I would try and find a good care home, they are not all bad.
Had a friend whose mum was in an excellent one, not cheap, she had nothing, but good things to say about them

If my old ma hadn't been killed in a RTA I would have gone down that route.
Have to be realistic and decide whether you can physically or mentally be a carer.
I know I couldn't and it would have been more unkind to all concerned for me to attempt that role.

You are no good to anyone if it takes its toll and you cannot look after yourself let alone someone else.
 
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woof woof said:
Yup. That's it. There's massive guilt that I can't cope and of course that would increase if our parent had to go into a home. My auntie was in one for several years and it was just awful but thankfully she didn't seem to notice and actually liked the place. She had a brain injury from early adulthood though and even when at her best wasn't exactly in the same world we're in. What we saw there though did affect us even if it passed poor auntie by.
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It is human nature to feel guilty when you fail to meet your own standards whether based/influenced by internal or external factors.

By the same token perhaps a feeling that you might be seen as selfish! However, whether viewed as selfish or self guilt you really need outside support/help, as afteral if you breakdown who will look after both you and your relative??? Would it be "right" for the full burden to be yours wife's responsibility.....surely her prime motivation is to give you her care & support.

Please realise, I don't wish the above to sound judgemental......but we all have (as mentioned by other posters) had akin but not identical situations and found we needed some degree of support & understanding by & from those unrelated to the circumstances.

Alan, please for your own physical & mental well-being as well as that of your wife, seek out the outside help and get the respite care support that you desperately need.

All the best to you this year and beyond :)
 
Another blazing row.

Mrs WW got a message from my niece saying she's "disgusted" at how we're treated her mam. I sent a message back saying I need help and took the wrong decision to knock on my sister door to ask what she's told her daughter. Result. Blazing row and she "wouldn't pi$$ on me if I was on fire." I tried to be calm and I tried to say I'm just asking for her to come maybe 10-4 one day a fortnight and got the reply that she works. Well, she only works 3 days a week. "But I don't know what days" Me "Well you ring me and you say I can't come Monday I'll come Thursday." Yes I shouted. Who wouldn't. She was just raging and shaking with I don't know what? Upset? Anger? A mix of both.

So, I've lost a sister over this and the sisters wont talk to each other.

In all of this my mam say "This is all over Mrs WW" which it isn't. Mrs WW is in tears in the bedroom wondering what will happen to her. If she leaves me that's my life over.

What a day yesterday was. What a day today has been.

I have my religious moments and I've prayed for help.

Oh and what have I ever done for her? Er... mowed her lawn, bricked up the hole in her wall, helped her with many little jobs, taken her places... sat with her when she was ill, phoned the ambulance, went with her to hospital... she did actually say I'd been good to her since hubby died and today it's "What have you ever done for me?" and "I wouldn't pi$$ on you if you were on fire" and repeated to our mam "I wouldn't pi$$ on HIM if he was on fire." She'll help our mam though. Really? When?
 
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You know. I just wish I'd never gone to my sisters. What a mess that's caused.
 
woof woof said:
You know. I just wish I'd never gone to my sisters. What a mess that's caused.
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Alan, actually going to your sisters has highlighted the issues with the current situation, and therefore gives cause for rectification - you have done nothing wrong, nor are you a failure for not coping with the current situation, please just bite the bullet and get some help in, as I said before pick up the phone tomorrow, don't put it off.
 
Mr Perceptive said:
Alan, actually going to your sisters has highlighted the issues with the current situation, and therefore gives cause for rectification - you have done nothing wrong, nor are you a failure for not coping with the current situation, please just bite the bullet and get some help in, as I said before pick up the phone tomorrow, don't put it off.
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@woof woof This 100% mate.
 
@woof woof

Please do take the suggestions made up thread as being to help YOU .

Tomorrow - pick up the phone and talk to your GP. For the present forget your sisters - you and your wife NEED help and the simple phone call will provide that.
 
She told mam I tried to hit her. I said "That's a lie, I did not" and she backed down. If she'll lie about me when I'm stood there I wonder what she's told her daughter? So I've lost a sister and a niece.

Mams just asked what'll happen to her (sis) when she's older? I suppose the implication is that I wont look after her. My reply "She's made her bed."

I'd like a reconciliation but I don't see how.
 
I feel for you Alan, I have some issues with certain family members here too, not spoken to one in particular for years and it's not from want of trying. I've never done them any real wrong, there was an argument where things were said and that should have blown over like normal family rows - instead they went out bad mouthing me, a bunch of ott lies, thankfully anyone who actually knew me personally saw through all of that and slated them for it. Didn't stop them, they'd dug their hole and kept insisting I was this terrible person, so I just blocked them from my life, completely. Enough is just enough sometimes.

I live with a chronic ill person, it can be overwhelming managing their meds, doing all of the house work, looking out for kids on top, the finances etc ... can feel like a burden, but we do it because we're decent people. You sisters, are not, and I would stop even asking for their help, I'd look elsewhere, to hell with what they think about that. Your mam is the most important person here, do what's right for her and just face it that your sisters are not significant, let them stew, let them rant - get help and take breaks. Also reassure your partner that she is also important here, and that just by sticking with you she is helping and ignore any negatives said against her, there's always a scapegoat, that's what she's become but you can turn that around.

Best of luck with all of this, horrible situation, have faith in yourself, get help and move on
 
I've just had a talk with Mrs WW and told her none of this is her fault. She's going to block the niece and sadly it looks like they're out of our lives.

As I said above, I'd like to patch things up but I see no way at the moment.
 
woof woof said:
I've just had a talk with Mrs WW and told her none of this is her fault. She's going to block the niece and sadly it looks like they're out of our lives.

As I said above, I'd like to patch things up but I see no way at the moment.
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I would say the ball is in their court on that front, don't stress over them any more. If they have any deceny they will come to you
 
woof woof said:
I've just had a talk with Mrs WW and told her none of this is her fault. She's going to block the niece and sadly it looks like they're out of our lives.

As I said above, I'd like to patch things up but I see no way at the moment.
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It's good to talk and you both need to talk to a doctor as the stress it all would of taken on you both is very high. You just need to call the doctor first thing and go from there.
 
Cagey75 said:
I would say the ball is in their court on that front, don't stress over them any more. If they have any deceny they will come to you
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She wont.

Years ago we fell out over her husband and didn't see her for years until I saw her on a bus one day and that lead to a reconciliation. So, she has a history of holding a grudge for years and at our age I fully expect that to be that as she has her daughter and I fear they'll feed and reinforce each others hate. I'm sad about it but at the same time the things she's said have hurt and at the moment although I'd like the family to be together and happy I really don't want to see her.
 
You have done everything right, not your fault and nothing to feel guilty about.

Social Services are the first place to try, closely followed by your Doctor.
 
woof woof said:
She wont.

Years ago we fell out over her husband and didn't see her for years until I saw her on a bus one day and that lead to a reconciliation. So, she has a history of holding a grudge for years and at our age I fully expect that to be that as she has her daughter and I fear they'll feed and reinforce each others hate. I'm sad about it but at the same time the things she's said have hurt and at the moment although I'd like the family to be together and happy I really don't want to see her.
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I know it sucks, I fell out with my only brother for years, he turned on my partner out of the blue and said some nasty things, I didn't think twice about booting him from my life. But he reached out to me via email after a time [had blocked him via all other comms] - it was a case of a thoughtful email, words he would never say in person - he had time to craft it ... and it worked, I think on the spot communication is where most anger gets dished out. In the older days a thoughful letter would oft do the trick, an email these days is much the same. Maybe you could try expressing yourself this way and if they don't respond, so be it, you tried. It sounds like the onus is on them in this case, but sometimes being the bigger person helps, you don't need to accept any wrong doing, just express how you feel. If nothing else the trace will be there, you'll have it on record that you tried to calm things
 
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My Grandma has fairly bad dementia. Lived alone. Had carers in.

She wandered one day and we decided that it was best we sought proper care. Living alone was so bad for her and ended up causing a huge deterioration in her state.

She's in a care home now and it's the best thing we could have done for her. She has a social life. She has someone there at all hours. She has her own space and has made friends. She's warm and fed. She hated everyone for about a week. Doctors and carers. But it's long forgotten!

She's 89. Had covid before Christmas (the home did well to keep it out of the place for so long) and was up and dancing last week. She's now had her first jab. My folks have been having fairly regular video calls with her during lockdown when possible.

Not all care homes are the same. I know they're not for everyone. But they're not all bad and also have a lot of positive aspects.
 
I can't really imagine what you are going through, but to be effective you have to look after yourself first. My mother had Alzheimer's and we had great help from the Council (who became involved after my mother went for a walk in her nightdress) They organised carers to visit mum on an ever-increasing timescale. We couldn't be there often as we lived almost 200 miles away, but we had friends and relatives who were prepared to help as well

As for care homes etc. Like everything else, there are good and bad ones. Mum was fortunate in that the daycare centre she went too also had some accommodation, so that made the transition a bit easier.

Daycare may be another option, but not sure how much of that is happening at present.

Looking after yourself may well mean, you have to take a big step back. You can hardly be criticised for stepping back. You have asked close family for help and they for whatever reason, they have chosen not too.

I too felt guilty for not being with my mum (and dad) when they were ill, but I had my own life and that of my family to also consider. It is a delicate balancing act. Looking back I am comfortable with what I did. At the time I was racked with guilt.
 
Thanks for all the support guys.

I'm very sorry for the split this has caused in our family and if I'd known I'd have tried to make it come out differently. Just emailed the niece as she didn't reply when I answered her message on my wifes phone. I'm sad to lose them but I'm not going to crawl on my stomach and beg forgiveness for asking for help.

Mam is blissfully unaware and happy enough. Thank God for small mercies.

It's onwards for me and I will seek help.
 
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woof woof said:
Thanks for all the support guys.

I'm very sorry for the split this has caused in our family and if I'd known I'd have tried to make it come out differently. Just emailed the niece as she didn't reply when I answered her message on my wifes phone. I'm sad to lose them but I'm not going to crawl on my stomach and beg forgiveness for asking for help.

Mam is blissfully unaware and happy enough. Thank God for small mercies.

It's onwards for me and I will seek help.
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Very sorry that you have had such a bad day Alan.

The important thing now is to get the help that is available and for the moment I would avoid contact with your sister and niece. You need some space in your life and to reassure Mrs WW that she is important.

None of this is your fault.
 
Very sorry to hear about the position you are in Alan.

As others have said a couple of options to think about are

getting outside help for perhaps one or two days a week and the agencies others have mentioned are the ones to go to and,

looking a care home.

I know you have said you do not want to consider a care home because your experience of them has not been good.

I can understand that, Mrs Tringa and I spent several months visiting care homes to see if any would be suitable for her Mum, who had vascular dementia. Some were OKish, some horrendous but we eventually found a good one, but perhaps we were just lucky.
Getting some help in for a day or so a week could give you time to look at different care homes if you wanted. The local council and the charity agencies would be able to advise about funding for day help or a care home.

I appreciate neither of these suggestions are going to be easy to handle and very difficult conversations are needed.

However, you have said if it was left to your sisters your relative(your Mum? Is that correct?) would be in a care home very quickly. From the concern you have expressed in this thread I am sure you would not want the decision left to your sisters.

I do not want to trivialise your situation but it reminds me of something that was said while I was on a Mountain Leadership course many years ago. That was, if you are alone and find an injured walker/climber from that moment on you are the most important person, because only you can provide help, and while doing all you can for the injured person you also have to look after/protect yourself, because the injured person is relying on you.

Given it doesn't appear you are going to get any help from other members of the family you are the most important person and need to make best decisions. I can appreciate that will not be easy, but what would happen to your relative if something happened to you?

I don't mean this they way it might come over but making some sort of decision about the future gives you some light at the end of the tunnel. It is clear from your first post you see the current incredibly stressful situation going on indefinitely.

I know this is easy to say but as, others have said, you must not blame yourself in any way. You are clearly doing everything you can. By itself this will be stressful without the animosity from other family members.

Dave
 
woof woof said:
Thanks for all the support guys.

I'm very sorry for the split this has caused in our family and if I'd known I'd have tried to make it come out differently. Just emailed the niece as she didn't reply when I answered her message on my wifes phone. I'm sad to lose them but I'm not going to crawl on my stomach and beg forgiveness for asking for help.

Mam is blissfully unaware and happy enough. Thank God for small mercies.

It's onwards for me and I will seek help.
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What Heather said below is bang on Alan.



Tigger.ufo said:
Very sorry that you have had such a bad day Alan.

The important thing now is to get the help that is available and for the moment I would avoid contact with your sister and niece. You need some space in your life and to reassure Mrs WW that she is important.

None of this is your fault.
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I know you're worried about the Doctors but they will help. Support for careers is a big deal to them

Is there a career's support group near you? I know my Mum caring for my Dad has found the emotional and practical support from her local group invaluable
 
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