Fear for the health of my Dad (prime carer)

[SusanH]

My Mum has Alzheimer's and vascular dementia and my Dad is her carer. My brothers and I do what we can to help, but we all have children and jobs and, in my case, live a 2 hour round-trip away.

My Dad had a dreadful day with my Mum today. He started before 9am clearing up as she has become doubly incontinent again. Whilst he was talking on the 'phone to the nurse to get some advice, Mum went ballistic and screamed at him for telling people her business and ended up punching him and screaming.

To make a bad day worse, Dad started to experience chest pains and had to be rushed into hospital by ambulance. After an ECG he was told his heart is fine (he suffers from angina) but that his pains were as a result of a hiatus hernia that had been made worse by bending and stretching to clean up, scrubbing floors and changing bed-clothes and also by stress (not surprisingly). My brother is staying with him tonight, but we are becoming increasingly worried that Dad's health is being adversely effected by looking after Mum.

What to do? Maybe some respite care in the short-term might give him a break, but it won't help in the longer term. Maybe we have to accept that he just can't cope any more? Mum has told him that she would rather live in a home than with him (this was after telling him she wanted to see him in his coffin). It is so awful to see one parent so very changed and the other run ragged trying to look after her. The nurse is coming out to see them on Friday, so I shall make sure I am there to try to express my concerns. All the focus has been on making life tolerable for Mum, but Dad's needs seem to be pushed into the background, particularly by the mental health professionals. I am beginning to worry about his physical and mental health and feel so guilty for not doing more to help them both.

Sorry for the long rant - just needed to get it out!

Sue

 

[lesmisralbles]

Dear Sue,
Rant, it will make you feel better
Goodness know's, I have done enough
I will not offer advice, other's who are more experienced than me, will come on soon.
Take care
Barb & Ron

 

[Grannie G]

Hello Sue

Only your father can make the decision whether to keep caring for your mother at home or to go for residential care.

But as your mother is so aggressive and needs so much physical care it is bound to have an effect on our father`s mental and physical health.

The nurse will have heard your mother`s outburst over the phone so will have a pretty good idea how much your father has to manage.

My personal feelings are a time comes when enough is enough. Don`t feel guilty, you have other responsibilities. Just be there for your father and make your concerns known to the nurse as you intended.

I hope some action will be taken.
Love xx

 

[TinaT]

This is such a worrying situation for all of you in the family. Your dad sounds like a saint of a man. It is indeed very hard work both physically and mentally and I'm sure that you respect your dad tremendously for what he is doing.

It is probably time to have a family 'pow wow', (if that is possible. Your dad may feel uneasy about getting any help and needs to be reassured that he does need this. Sometimes help can seem to be very intrusive with strangers coming and going in his home to assess things and sort out any help he may need in caring for your mum. Your mum will probably be very antagonistic as she will expect your dad to continue to look after her without help. These are normal aprehensions which have to be overcome if help is to be accepted. Your mum may never be able to accept having care from someone outside the family. I have encountered such reactions again and again here on TP and personally as my husband Ken never wanted any one else to look after him but myself.

There is help out there but you have to go out of your way to get it, and never take NO for an answer. Social Services would be one of my first ports of call to ask for a) respite and b) any day care on offer. You may have to pester social service to get some attention. They are usually overstretched and under funded so seem to work on a 'crisis' basis. Your family situation does seem to be heading for crisis such as your father's ill health and I would tell Social Services so in no uncertain terms. I would also call the GP looking after your mum and dad to ask for help.

If your mum is under the charge of a Hospital Consultant, then I would also phone and ask for an urgent appointment to see if there is any change in medication which could help to 'dampen down' mum's verbal agression. I would also ask the hospital if there is a Community Psychiatric Nurse who could come to visit mum and dad.

Social Services should be able to put you in touch with voluntary and statutory organisations who can offer help.

Do keep in touch with us here on TP and let us know how you go on. Bless you for being such a kind and caring daughter.

xxTinaT

 

[jane@hotmail]

Hi Sue,

Your situation sounds very similar to mine with regards to, Dad being the carer, living 2 hour round trip etc.
My Mum started to try to get away from Dad, and and unbeknown to us, he spent his nights propped up in bed listening out as she went around the house looking for an escape route. Obviously this took it's toll and he hit crisis point and we had to move mum in to specialist alzheimers home. Dad was devastated.
We where able to afford to have a live in carer come in and live with them and this solved a lot of problems. It took abit of adjustment on their behalf, but if it meant mum could be home again, then Dad would have done anything.

Something has to be done for the sake of your dad. A lot has to do with if your dad is prepared to accept that. He has to understand that he has to look after his own health, or else he won't be any use to anyone. The choices you have, I'm sad to say, are determined by their financial situation. Although, I have to say, that is my finding, other TP members may have a different opinion............
If your dad can afford it, enroll a care agency to find you a carer. If you have a live in carer, they can help your mum wash, dress. Do the shopping, prepare their meals. You could have a carer that comes in for a few hours a day to suit your dad. It was a real solution for my dad and if they can afford it, it's worth considering.
If you parents have moderate income or savings the choices are more restrictive, and I have to admit I have little knowledge of what options they have available to them, so hopefully other members can advise you on that.
I think you need to find out what your dads dream solution would be, and then you can go about trying to achieve something as close to his ideal as possible. Remind him that nothing is set in concrete, if the route he chooses turns out wrong, it can be altered.

I hope you're able to help your dad make his decision on care home, home help etc. It's always going to be a tough one, but I wish you the best of luck.

Jane x

 

[May]

Hi Sue

Your post could have been me 18months ago. Yes, carers do get 'forgotten' by the professionals, but your Dad is entitled to a carers assessment for his needs, do enquire about that. However you may come up against the problem I had, in that your Dad may refuse this. With regard to looking after your Mum, Dad is the only one who can say 'enough is enough, I can't cope anymore', my personal experience of this is that this comes later rather than sooner..... but it's not a decision we can take for our parents. I our case, my Dad got to that stage, Mum was admitted to a nursing home and he promptly had a heart-attack two months later! He's fine now and has made a full recovery, I suppose the reason I'm telling you this is not to frighten you but to say things happen when you least expect it, so try and get Dad to take care of his health now by accepting all the help you can muster!
Just to pick up on a comment in your narrative, you say Mum has 'become doubly incontinent again', does this means she isn't all the time? Could she possibly have a UTI that is causing this?

As for the dreaded 'guilt monster', we all have that but try not to let the little devil run riot! We are only human, can only do so much and have families, lives and commitments outside of the dementia circle that also need our attention. Make full use of the nurse's visit, I used to write down what I wanted to ask, as it was very difficult discussing things with Mum sat there, this might work for you.

Sorry if I've rambled, just wanted to let you know you're not on your own, and I do hope that the nurse's visit is productive for you. Let's us know how things go, good luck and tale care.

 

[Debby Short]

Hi Sue,

Sounds like me just a few weeks ago, mum screaming, hittng dad, dad having chest pains, and even mum telling dad about seeing him in a coffin - it is horried to see our parents like this. Oh yes and I like you have a 2 hour drive from them as well.

In the end we took the decision out of Dad's hands, and my sister contacted social services, we bascially forced the issue of help - I know it is hard - but my Dad says now that he is grateful that someelse made the decisions for him.

Mum eventually went to a day centre 3 times a week, had a someone from crossroads visit 1 afternoon a week and mum & dad started going to an AZ coffee moring once a week.

Everyone says don't feel guity, which is very true, but easier said then done. I would love to sell my house and go and live closer to dad - but know it is not realistic.

Good luck with getting help for your Dad, and keeping reading TP, you will pick up loads of advice, even from old Threads, I know I have.

Sending hugs as we all always need them.
Debby
xxxxxxxx

 

[SusanH]

Thank you everyone for your considered and helpful comments. Mum has just been prescribed anti-psycotics for the aggression but these seem to be making her incontinent, although the doctor thinks this is due to a "bowel overflow" and not the drugs. It doesn't help that the faeces are very liquid and go everywhere (sorry to be so graphic)

Unfortunately my parents are not well-off, but we may be able to help them with a private carer. I have thought about giving up my job to help more as I currently can only go to see them once a week. Of course, if I don't have an income we will be less able to help them financially - what a viscious circle it is!!

Sue

 

[gigi]

Hello Sue,

I'm thinking if the doctor has said your mum has overflow...and it's liquid ..that this is a classic sign of major constipation.
Do you know if she has been given anything to help with that..if not it's worth getting it checked..
Constipation leads to increased confusion and agitation..and may be a contributory factor in your mum's case to her aggression.

I know you're a distance away but a district nurse could assess your mum...I'm surprised the doctor didn't pick up on it..or maybe he did.

I do hope you get things sorted..it must be so hard for you all not being near to help out.

Love gigi xx

 

[jane@hotmail]

Hi sue,

If you don't have the resources to employ private care, which after all, for live in care is about £100 a day. I wouldn't even start down that road. I would follow the advice of the other posts and start kicking up a fuss. You're entitled to help and support, but from the posts I've read already, you sometimes have to make a nuisance of yourself to get attention. If you get care in and pay for it privately, I would worry that they may put you as low priority as they will see it as you can afford to pay for your own care. I may be wrong, but bare that in mind.
The road ahead is long, so lay solid foundation stones by getting as much support in place now, to see you through the tough times. A quick fix solution is just that and can seem to solve a problem, but may create problems further down the road........If you know what I mean.

Hugs from me too, Jane x

 

[jc141265]

When my parents discussed the possibility of Dad needing to be put in a care home eventually (back when he was originally diagnosed) and my Mum said,"How will I ever be able to do that?" My Dad simply said, you will know when it is time for that. This answer initially frustrated us, because I guess we were hoping for his permission for this terrible decision to be okay with him. But in hindsight he was right, when it was time we knew. Like your Dad my Mum was running herself into the ground and one of her great fears was that what would happen if she got to sick to look after him...and she was only in her 50s so I can't imagine how an older and more physically frail person might cope with all the hard work that caring is.
But although we knew when it was time, it still wasn't easy. Mum has always said how surprised she was that all of us kids were so supportive of her putting Dad in a care home, she was very worried we would be disappointed with her or angry. Thats not to say we weren't greatly distressed by Dad being put in a care home, but we could see that at the time there was no other option for Dad or Mum. I think too that often the highly dependent relationship that develops as a result of this disease exacerbates the anger the sufferer feels towards the carer, so sometimes it is actually kinder to both the carer and the sufferer to separate them...kinder for the sufferer as well as they seem to feel hurt in a way by the fact that they are so dependent on the carer...perhaps they feel as if the carer has taken away all of their own freedoms. It seemed to me that for the years that Dad spent in the home (he is now back at home with Mum again) their relationship healed, and he was able to enjoy her as his wife again and she was able to enjoy him as her husband again, once the stresses of the caring world were removed from both their lives...in a way it seemed as if they both needed some space to be able to see clearly again.
Your Dad being older no doubt is probably more likely to not want to lose his wife, and perhaps would prefer to hurt himself in caring for her than give up on her...but also he may be worried about what his children think. We finally convinced Mum in a way to put Dad in a home as we flatly pointed out that we didn't want to lose both of them to this damn disease and that if she didn't give in, we were very afraid that this might happen.
As far as I am aware (although I live in Australia) care homes do not have to be a permanent solution, so perhaps you could convince your Dad just to trial it. He may decide he doesn't like it that your Mum is even angrier with him for giving up or he might find out like we did with Dad that at least for the first two years Dad and Mum were both happier once Dad was in the care home. Dad seemed to like the routines of the care home, and Mum was able to start having a life again. In the third year the staffing at the home seemed to go downhill and so did Dad...but by this point Mum was missing Dad so much and was so concerned by his downward spiral and the guilt she was feeling that she took him back home again. But this time both of them are happy...possibly because this time Mum felt like she had a choice in the matter of caring for Dad and as a result Dad felt like he was a welcome joy to be back in the house??
Not much good straightforward advice but I thought I would mention our story in the hopes that their is something in it that you can use to help you in this difficult time.
Best of luck,

 

[sad nell]

Thanks for that Nat
It seems to sum up our situation at the moment, Trev being totally dependent on myself, also seems to make him very agressive towards me, which is so not him, prior to AD he was so gentle. but know iam constantly covered in bruises when he lashes out when i tend to his personal care, Trev is in respite this week and i feel alot calmer, but miss him so dreadfully. so will give it another shot for my sake as much as Trevors. Hope you are well, would love to see more posts from you, it makes my day when the photo of you and your dad appears
Pam

 

[jc141265]

Oh Pam I'm so sorry that Trev's progression seems to be mirroring Dad's. If I could do a deal where I had to relive all those years again, in exchange for sparing you guys I honestly would take the deal. Its just not fair that you have to go through this. You shouldn't have to.
Something silly for you....I've always had very bendy joints, so much so that i can bend my fingers backwards at their joints with no pain...for a few years there with Dad I used to joke 'Finally I know why God gave me this body!' cos Dad used to twist and bend my limbs in all sorts of ways, so much so that I thought he might have broken something if it weren't for my rubbery bones. It can really hurt what they do to us, when they are young, strong and still physically fit. Again I am very sorry for your bruises. If you can send me your email again via private message...I'd love to write to you more often, send you the funny jokes I receive etc.

 

[SusanH]

I'm so sorry to hear that you are having to deal with physical violence. I have had to cope with the verbal aggression of my Mum today and that was upsetting enough! Although she threatened to throw something at me, she didn't (this was after accusing me of stealing her money and treating the place like a cafe when I was trying to make her some tea!) Having spent the last 12 hours with my Mum, I now realise that my Dad really is a saint. I spent most of the day cleaning up *!"? because of Mum's bowel overflow problem and coping with her aggression.

I arrived at their house today to find Dad in extreme pain, to the extent that he cried when trying to get up from his chair. I phoned the doctor, who came within 2 hours and had him admitted to hospital. They think he may have a twisted bowel, or blockage. Why he was sent home on Wednesday I don't know. We are trying to run a rota of staying with my Mum so that she doesn't have to go into emergency care, but she is diisorientated without him and has become quite aggressive with me today (aparently I was "as nice as pie" yesterday, but today's anothe matter) She sent me right back to those teenage rows when I hated my Mum - I feel so bad because I know it's the illness, but she was this verbally aggressive when I was a teenager and I don't like going back there!

Oh well, my brother is staying with her overnight and I'm on duty again tomorrow, when we should hear what's going to happen with my Dad. I phoned social services and they "offered" to close the case because the family are rallying around over the weekend and that I could reopen it on Monday if necessary - I told them to keep it open - I don't want to have to start from the beginning on Monday.

Sorry, it was a bad day today. Thank God for my brothers, two of them are brilliant whilst the other doesn't care at all - two out of three ain't bad I suppose.


Sue

 

[Grannie G]

Dear Sue

There is no shame in deciding that enough is enough. And when your father is discharged from hospital he will be in no fit state to care for your mother.
Love xx

 

[SusanH]

My Dad had an emergency operation on Saturday evening - they removed his appendix. My brother wants to try and have Mum with him and that is what we are trying for the next few days. I took her to see Dad in the hospital today and despite her starting off by asking me "which Colin is the one in hospital, because there are two you know?" she seemed genuinely pleased to see him and even gave him a kiss. He was pleased to see her too and to check that she is ok. Poor Mum, she is finding it all so hard to cope with. My brother is hoping that being with people she knows will be better for her than with strangers, but I just hope he can cope. In the meantime we are trying to help my Dad, who will be in hospital for at least 5 days and will need care afterwards too.

I think this has been the worst weekend of my life. Thank God for two of my brothers.

Sue

 

[SusanH]

Just an update. Mum refused to go with my brother and he has had to drop everything to stay with her. She has been very aggressive and threatened violence. Fortunately my two brothers are both over six-foot and not easily intimidated, although I know they are both upset. I think I have to contact social services tomorrow as we just can't cope with this. If she refuses to go into emergency respite care, what can we do?

 

[Grannie G]

If she refuses to go into emergency respite care, what can we do?

See if her doctor can persuade her. You are in a very difficult position as your father will be in no state to care for your mother when he comes home. The doctor and Social Services must have an answer for you. I hope so.

Love xx

 

[SusanH]

... The doctor and Social Services must have an answer for you. I hope so.

Oh Sylvia, how I wish they had.

We have spoken with Social services four times today and all they can say is that our case has been referred to a social worker, who will try to call us tomorrow. My brother and I are having to take time off work (but there is a limit to how long our employers will be sympathetic) and we have 4 dependent children between us. I am on my own with my 12 year old this week as my husband is overseas. Tomorrow my brother can't stay overnight and neither can I - I cannot subject my daughter to my Mum's unpredictability and aggression. I also don't see why she should have to miss school (which is a 2 hour drive from my Mum's house). I think that whilst we are struggling to cope, Social Services will let us struggle. All they seem interested in is how many days off work we have taken so far (6 between us) Is there a magic number when they will help us?

Mum has become doubly incontinent over the past week and will not let my brother help. She is very distressed, sometimes verbally and physically threatening and has locked herself (and me!) in and wandered off on more than one occasion. She clearly needs more help than we can give her.

I live a 2-hour round trip away and am trying to juggle work and getting my daughter to and from school with looking after mum and visiting Dad in hospital. How can I get them to take us seriously and offer some help? I feel like taking her to Casualty and leaving her there and then someone would have to DO something. Of course I never would, because it would cause her too much distress, but I am worried about tomorrow night. Are Social Services trying to provoke a crisis before they act? Is this the way they operate? Does anyone know what I could do to get some action (apart from Casualty!)

Oh, and my Dad, who is in hospital after having his appendix out says he feels so bad he would rather be dead.

Sue

 

[TinaT]

What a terrible, terrible situation for all of you. It is obvious to anyone reading that you are at the end of your tether. What can one say when social services have not stepped in and taken over? How can they let families go into such deep crisis before an emergency respite bed is found? It is beyond belief.

xxTinaT