the pressure of being a carer and the affect on relationships , advice ...invisibles

[leedsfan]

5.16am and having just read all the previous posts I am sitting here wondering whether to go back to bed - spare room, or sneak my cold feet into bed with OH.

Had a huge row, well huge for us, on going to bed last night as I said I wanted to move so as we could take Dad in. All rubbish of course, in the almost cold light of day I know damn well it wouldn't work. I guess I am more desperate then I realised.

This Vascular Dementia is driving a wedge deep into my marriage, my being a Mum, my being a friend. I am neglecting so many people as I care full time for my Dad who I love and hate in equal part.

Just want it to stop.

But, like so many here, later this morning, I will try and be nicer to OH, I will phone my sons, I will find time for a chat with my friend, after I've sorted Dad.

Good luck today everyone.

Jane x

 

[JVCx]

i just wondered how carers full or part time find a healthy way to maintain their relationships with their other half ..with the added pressure of dealing with a love one with dementia .what strategies they may use so home life is kept as normal as possible .
For most carers , they will be looking after their mum or dad ,, but their partner has no deep emotional attachment to their in laws . they may feel sorry or sad to see their inlaw suffer with dementia , but they cant be expected to feel the same ! my partner is not an invisible and is really supportive , but it must be hard for some carer's partners , as it is not their mum or dad suffering with dementia

the whole suffering dementia causes , is like throwing a pebble into a pond , and the ripples go all the way across the pond ..
everyone is affected from the poor person who goes threw dementia , and how they feel and dont understand what tricks their brain is playing on them . to their nearest and dearest who care for them . and how their nearest and dearest cope . and how their nearest and dearest are affected to !!!!

I understand this to some extent.. Although not a full time carer for my amazing Nanny who has Alzheimers, I do go through this in my head. She has changed so much she has gone from doing everything, cooking, cleaning, knitting, sewing, baking, shopping while my Grampy was at work, to not being able to get up off the chair (she also has vascular disease) - this is so hard to see, and the Alzheimers has made her talk some nonsense, but she is so funny!! (she has had half of the England squad round for tea but Wayne Rooney isnt invited again as he was rude. OK Nan!!!) She really does make us laugh and she laughs too, so that makes me feel a bit better.

My Grampy does so well with her he really does, and I am really proud of him. My partner is also really close to my Nanny and Grampy - we had been together 4 years when Nanny was diagnosed so he was there for us all. I think maybe a bond should be made between your partner and your parent now through the unfortunate diagnosis. I always fear that losing contact with the person with dementia could let their memory of you deteriorate and you dont want that for your partner. My house is 120 miles away from my Nanny so I am always fearing this but I drive down every other weekend without fail with my partner as much as I can. Talking to him about it will help him see how difficult it is for you and hopefully your relationship should get stronger due to this, of course he needs to know youre not neglecting him so just try and get as much personal time as you can (under the circumstances I know that can be hard) but they must remember that it is your PARENT who brought you into the world and the least they deserve is your care. I admire you a lot because I see how hard it is for my Grampy but she is all he has, all the kids and grandkids are grown up, they lost their dog .. whereas you have your own life too so it really must be difficult but loads of respect for you. And I wish you luck!

 

[Christin]

Lovely photo, JVCx

 

[George Yaw]

Who cares about the carer really cares money money money

The pressures of being a carer of which we are not trained for, but do what we can for our partners are surely enough without being bullied and threatened by an agency to fill out a means test so they can charge me more. this harrasment has caused me sleepless nights, nausea, as if my load was not enough but they keep adding to my stress, are they trying to make me are a sastistic of the 1 in 4 that thinks about something they firmly do not beleive in,they will not take no for an awnser,I know how much we can afford i am not an idiot now they want to manage our money so they get maximin dollar, would they do this to their own mum and dad.
They dont understand our generation always paid there way and never borrowed money except from the bank never took handouts always managed our money which determined our lifestyle not the opposite way like gen y.well i am not giving in i will still mnage our money so they stick there form where they got it from "a pie in the sky" but the other worry is once they took our package no other agency wants to touch us THis is blackmail /extorstion not having it.They agreed with me at the start that was all i could afford and they took the package on that basis then raped it and now wants more Yes i am angry disgusted and distressed Is there anyone out there that can help or talk to them to allow asleeping dog lie

 

[stillcaring]

We had my aunt with dementia living with us for about 3 months in 2006. At the time we had 3 children aged from 9 to 14 and my husband was also unwell with CFS. It was horrendous. My aunt would get lost in the night and try to get into bed with the children. We only coped because we knew it was a temporary stage (we were selling her house in London and buying her one near us, where she actually went on to live independently for a while before having to go into a CH). My mum also has Alzheimers. She lives just round the corner from us so I can care for her, but I never stay over. After the experience with my aunt I know that we can never have my mum in our home. I spend a lot of time with her and one day that may not be enough and she may have to go into a CH, but so long as I can walk away and come home somehow I can keep the relationships with the rest of the family separate from what has happened with my mum.

 

[gardengirl]

sleeping/dozing

Can anyone advise! The love of my life has started dozing/sleeping during the day. We usually go out during the day/attend various get togethers, so we keep active! He does sleep during the night, but has started sleeping during the day as well! Ideas as to what causes this - has had dementia for about three years now! Just curious! Is it the progression of the illness?

 

[Owly]

It may just be a phase, gardengirl. My mum has done this over the last year. Then she picked up again and can stay awake all day now. Too much melatonin produced in the brain probably. I blame the planet Neptune and its temporary influence (I study astrology).

 

[SisterAct]

My Sister and I looked after Dad for over 8 years. For the last 3 years we moved in (with our OH blessing) and between us we were with him 24hrs. Where we affected by this?.......oh yes!

I only saw my sister on a Saturday for 5 hours when we had the carers vouchers.
I didn't have the time or the energy to visit my son and daughter
Only saw OH when it wasn't my 'shift'
I still went to work but had no concentration due to lack of sleep
On a rare night out all I could talk about was dementia.
Couldn't baby sit for my son and daughter, which I used to love doing.
Nights out with colleagues a no no. Any spare time spent on OH and family.
Sleepless nights.
Organising carers when CHC was awarded....not as easy as it sounds.
Stressful moments with Dementia related issues
Frustrating times with 'officials'
Neglecting my own health.

Substitute WE for I as there were two of us.
We were a great team
We found out who are true friends were
We found TP
We loved our Dad and manage to laugh in the face of dementia.

Would we do it again?

YES

 

[Annie56]

Both our sets of parents moved to our town to be near us. Sadly his mum has now passed away but he spends most of his time looking after his Dad and I spend most of mine looking after my parents (one in a CH and the other still independent but with mild AD progressing), although we both still work full time. This works well, we neither of us expect anything of the other as there is no time. We have few opportunities to go out together as he spends his evening with his Dad who needs company, and I need to put Mum to bed at 9pm. Ocassionally kind friends ask us round for a meal but with the knowledge that we both need to interrupt the evening to care for our parents - although we try to stagger visits so we don't appear too rude! On my birthday recently we managed 1.5 hours at a local restaurant between teatime and bedtime visits. We know it won't always be like this, but boy it is hard at times.

 

[SouWester]

Partners are different

The threads in this section bring out a point which has been bearing in on me recently.
I have seen my late mother suffer from AD and my late mother in law.

Now my wife has it there is one big difference, you don't go to bed with your mother or mother in law. With a partner it is 24/7.

Again the point that so many people make is so valid, it is assumed by everybody that we want, and are suitable to be, carers. I feel so trapped, I can't divorce her, she could not cope and I still want to be with her although I lose a bit more of her every day. There is no end in sight and it is hard to get advice about when residential care will be necessary. 'When she becomes a danger', is the most useful thing any one has said but how long will that be?

I am far from convinced that I make a good carer anyway.

 

[shopgirl]

it gets, harder for all involved

Sadly it's terribly hard to maintain any sort of relationship for me and my OH at present. He has moved back with his mother as she is clearly much happier whilst at home however it means there is very little time for us. I have seen him for an hour this week. We are both working full time and have 3 kids between us so it's kind of full on at the best of times but now it's becoming untenable. The only time we get together is when his mum is taken into hospital for other health problems. How awful is that!!feel so sorry for both him and his mum as they're genuinely good people struggling with an awful disease. I hope everyone out there manages to grab what time they can together

 

[worriedcarer]

Find forgiveness

This is my second marriage to a wonderful gentle man of four years. Two of them have been embroiled in the challenges of my mum becoming a widow six months after we married and us becoming aware that things were not quite right. Her behaviour was very aggressive towards my dad when he was dying. Then it was directed towards my brother who she said should have died instead of my dad. She said terrible spiteful things, behind his back of course!! The more she was rejecting my brother the more he blamed me. Could not explain to mum what her behaviour was creating as she just forgot things. I still cannot believe that people with dementia are so cunning. My husband and I supported mum with shopping, doctors, day care, banking and when my dad was in hospital she demanded us to take her everyday which would take us through busy traffic 40 mins there and back and when we got there she just wanted to kiss my dad, stop us asking doctors what was happening and take her home for her tv programmes. The venom and accusations coming from my siblings was shocking but not surprising to me as I was used to it but my poor husband must have wondered what he let himself in for. My mums spite was eventually directed towards my husband (was told he was a barrier to have me to herself) accusing him of stealing and taking her tv remote when she misplaced it. He apparently sexually abused her and called him a paedophile but not to his face of course but for the enjoyment of my brother. My siblings encouraged this and the hospital she was admitted to asked my husband to stay away. It did not help to have my siblings talk to my mum about her childhood and the sex abuse and also the Jimmy Saville drama on tv. He has stayed sane in all this and they just want to destroy him. I have now walked away from joint power of attorney with my sister and now looking at counselling to help me get over the guilt. I would like to know why this happened as mum was as nice a pie when my husband and I visited but would apparently be scared of him and anxious if we went by what everyone else said. I will add that there is absolutely no chance of my husband ever having done anything as we were always together and my siblings I know believe this but love to hate him as he has made me happy. I could take it from them but not my mum

Find forgiveness in your heart for your Mum it's just the illness sadly. Dementia is a very strange illness and those suffering from it do very many odd things. This is obviously one of them. I have been looking after my Mum for years and was shocked at how much venom she poured on her neighbour who was nothing but an angel to her - it was the beginning of our journey with the illness. Mum now lives with me and it isn't easy but I know I am doing the right thing. You only have one Mum. Somehow you need to visit her again, I think you will regret not doing so later, but don't put your husband through the stress of going with you, it's not fair on him, bring a friend to give you support. Its a very tough journey and you've had to deal with the grief of losing your dad along with a kind of grief in losing your Mum as you knew her so don't be hard on yourself. Do go and see her if you can. Different people cope with grief in different ways and maybe that explains your siblings behaviour. Remember you are not travelling this road alone.

 

[Sunsmile]

Ive been look after my bf mum for a few year we took her on to living with us bought a bigger house made everything she feels stable and comfy she is very happy to living with us, most of time im the one care for her do everything for her I dont want to put the pressure to my bf I know its hards to look after and living with people with dementia, I let him out about do his own thing and I stay home to look after her but thing not seem to work it has been lately my bf so easily to get angry sometime acts like a child with tantrum at home, plus his mum condition is developing the agressive as I know this gonna happend, I explain my bf about dementia from step to step of how her condition will change he just not pay much attention now im very depress as I have 2 anger at home I love to ask my bf to see specialist learn to cope up with his anger but im not brave enough to tell him that, I dont know what am I gonna do, I know the easy solution I just walk away from it all but I cant do it because I do love and care both of them, what shall I do?

 

[src123]

Light at the end of a tunnel

I have posted previously how me and my very supportive OH cope ( you can see my previous posts under Il Gufo). We have decided to take a week a month 'off duty' and kind of forced my siblings into covering those weeks, which my sister really stepped up to, and my brother grudgingly so. Mum still manages to live by herself, but does need a lot of supervision, and I only live a few minutes away, my siblings a couple of hours. So the weeks I am "off duty' mum has to go and stay with them. Not sure if you have any siblings or other family who can help, but if so maybe my plan would work for you? Obviously you don't have to really go away each time, but it is a great comfort to know I now have one week a month to recharge my energies, and spend time with my lovely OH

We did the same. I have persuaded my siblings to hire a cottage for a week and look after her so my husband and I can get a break for a few days. We are currently negotiating with current SS to arrange carers for personal care during that holiday.

Just to give some background: my elderly relative was treated very badly in the CH she was in. The SS at that time was useless and spent most of their time ignoring what was going on. With the help of my kind and supportive husband we brought her home to live with us. We both work full-time. I give her her personal care in the morning and night, but have a carer coming in at lunchtime. I was feeing really tired and generally sad about the her situation at one point.

We decided to make time for romantic date nights on the weekends when no talk about her dementia and worries are allowed. We allocate one day only -friday to deal with any issues or admin work to do with her dementia.

I am also doing an online Cognitive behaviour therapy course which encourages me to put positive things back into the day and not feel so down. To focus on the present rather than what happened to her in the past, called 'Beating the blues'.

She sometimes hallucinates and shouts and swears at me and carers which I used to find upsetting. I am working through a workbook on NLP which encourages positive anchors. This helps me deal with these difficult types of behaviour. The workbook is by John Seymour and Joseph O'Connor.

I believe there is a light at the end of the tunnel. Hang in there.

 

[jeannius]

carers

I cannot advise what it would be like to have a relationship with your other half when dealing with family memebr with dementia but I know what it is like to be stressed from this horrible disease and I think more needs to be done to look after the carers and not just leave us to get on with it. My blood pressure is up whilst I worry myself to bits about leaving my mother whilst I go on holiday because she is a very stubborn lady and makes my life hell at times especially with the mood swings that dementia clients have. Doesn't want to take meds, doesn't want to do this or anything suggested because I am "telling her". I would imagine marriages and partnerships are under a lot of strain with parents who have dementia. I think carers need to start shouting for more consideration with GP's, and dementia care societies.

 

[Sunsmile]

I do understand his mum condition anger agressive just because her illness but when I have to deal with him thats so awful 4 years since we are living together his anger seem more maybe cuz at the moment his mum illness and he not wants to accept it, and im worry hoping he will not get the same as his mum because his oldest brother whos 50 seem to have the symptom of dementia he got paranoid forgetting thing I was talking with my bf maybe it wil be a good idea for him to get check out as he can be heritage from his mum, is it possible for check out he is 45. Thank you

 

[Tigers15]

Relationships

If only I had known before: No one said that families can be torn apart, no one warned us. Had I have had knowledge of the devastating effect that Alzheimer's regularly has with family relationships I could have seen the signs. Perhaps I would have reacted differently to my sister's dramas and irrationality. Hindsight is such a wonderful thing, but so is foresight if you are pre-warned of what might be. This time last year my dad was still living at home, looking after the old lady down the road. My sister and me were fine. Now my dad requires 24 hour nursing care and is in a home. Me and my sister - so sad, I doubt that we will ever be reconciled. Please don't let fall outs happen to your family, see the stress and bereavement for what it is and somehow work through it.

 

[Witzend]

Find forgiveness in your heart for your Mum it's just the illness sadly.

To be honest you can tell yourself 'it's the illness' until you are blue in the face, and you know it's the truth, but it doesn't make nastiness/aggression etc. any easier to cope with, especially when it seems endless, day after day after day.

 

[spurs50]

Pressure of being a carer and effect on relationships

I have been very lucky to have a very supportive husband, who helps me care for my mother with Alzeihmer's. We are fortunate to have good carers which enable my 93 year old mum to live in her own home. He will often go round there to assist my mum, who fortunately accepts his help. She has had Alzeihmer's for 8 years and was lucky to have had Aricept from day one of her being diagnosed.
We both sometimes feel our lives revolve round my mum' needs but this is inevitable.
I note on here that relationships with siblings can be difficult and that this is not uncommon. I find this to be the case too.