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

Discussion in 'ARCHIVE FORUM: Support discussions' started by bmw777, Mar 22, 2013.

  1. bmw777

    bmw777 Registered User

    Feb 10, 2013
    238
    essex
    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 !!!!
     
  2. Forestridge

    Forestridge Registered User

    Feb 10, 2013
    114
    Funny you should say about the ripple effect, I was thinking this yesterday. Mum has just been diagnosed but her personality changed years ago and we're having to come to terms with the fact that a lot if the things she said about people probably aren't true. My Dad and brother don't talk (brother's decision) but apart of this is due to beliefs he held about my Dad got from my Mum. My Dad who is divorced from Mum is having the realisation that she said untrue things about him. Plus Mum is estranged from her sister overseas. A lot of the things she said about her probably aren't true either.

    With regards to partners, I think it is really important to make time for each other and go out and do 'normal' things as much as possible - though I know for some people that just won't be possible as there won't be cover for them. Mine is very supportive, I hope I was supportive when his Mum had cancer but she was overseas. Mum is round the corner so it has much more impact. His Dad is still overseas and is 88, has Parkinson's plus fell recently knocking two of his teeth out so I know he's really stressed about him but trying not to worry me.

    We make sure we sit down together for an hour each evening before bed and watch an episode of a series and even if one of us is too knackered to talk, at least we are doing something together. But I guess it must be very hard to be a partner of someone caring for someone with Dementia, but that's the way it is. We just have to get through it trying to keep our relationships as intact as possible for when we won't be caring any longer, however depressing that seems.
     
  3. at wits end

    at wits end Registered User

    Nov 9, 2012
    753
    East Anglia
    I am lucky in that my husband is very supportive of my caring role with regard to my gran. Since she has moved into the CH we are learning to make the most of his emotional distance from her. When gran is unhappy she lets me have it both barrels when I visit, but only until I have get her a cuppa, then she calms down and we can discuss her problems.

    Just last week we realized that if my hubby goes in first she gives him the both barrels, and it's like water off a ducks back to him, so i now make the tea before i even say hello to her, by the time i get to her room the worst of it has passed.

    Obviously this only works when he comes with me, but it does take the stress off!
     
  4. Il Gufo

    Il Gufo Registered User

    Feb 27, 2013
    203
    bmw777

    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 :)
     
  5. Christin

    Christin Registered User

    Jun 29, 2009
    5,038
    Somerset
    My OH and I cared for his father in our home. I initially agreed to this because he was my husband's father and my children's grandfather. He had lost his daughter when she was a child and was widowed very suddenly. Quite simply he had no one else, and I did have enormous respect for him. At that point he treated me like a daughter.

    As time progressed it was very tough, it did cause some arguments but looking back it wasn't all bad. Although I was the one who initially stayed at home with small children, then working, and then caring at home again, my OH was very supportive.

    I think the one important thing is to sing from the same hymn sheet so to speak. We did have some very difficult years, when outside and professional help seemed thin on the ground, but in the end when the constant searching for my OH, the sleepless nights, and the bathroom issues, became too much, my OH understood I had had enough and agreed to look at permanent care.

    I really hope all this didn't adversely affect my own children, in fact, I think it has made them more compassionate and understanding of other people.

    So, in answer to your question, I would say its important to have some quality time together, and to be very honest with each other about your feelings.
     
  6. missmarple

    missmarple Registered User

    Jan 14, 2013
    206
    My husband has generally been very supprtive and when we first got together he was a big fan of my Dad's. As Dad's Alzheimers has taken hold, and his behaviour has been affected, I've seen my H's tolerance become eroded. Dad has kicked and slapped our eldest son, all but ruined the last holiday we all went on together with his impatience, rudeness to waiters, endless demands etc. Now I go to visit Dad on my own. Dad occasionally comes to us (he can still get around, just about) and for his next visit my husband suggested it should happen when he's taking a few days off to go on a short break with friends. So that's how it's affected my husband's relationship with his father in law.
    The stress I've been under (Dad's a widower, I'm the sole responsible adult invovled AND my brother has severe mental illness) means I've been in counselling for the last 9 months, and that has taken down the amount of venting I do at my husband. The whole thing is bloody tough.
     
  7. Jaycee23

    Jaycee23 Registered User

    Jan 6, 2011
    384
    uk
    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
     
  8. bmw777

    bmw777 Registered User

    Feb 10, 2013
    238
    essex
    jayce with family like that who needs enemies ? your mum cant help the things she says .it's the dementia talking !
    out of every cloud comes a silver lining and at least you know you have a lovely husband :) who stands by you threw thick and thin . xx
     
  9. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,589
    #9 garnuft, Mar 22, 2013
    Last edited: Mar 22, 2013
    Oh Jaycee, what a diamond you have found. A gentleman, as you say.

    My Mam has an irrational dislike/hatred of my older sister's husband.

    He is a lovely, kind, thoughtful, funny man but Mam can't see any of it.
    She has this story fixed in her head that he touched her boobs when she was 16....
    He is 20 years younger than her, whoever it was that did the evil deed it wasn' my bro-in-law.
    When big sis takes her to her house for lunch occasionally, Mam treats him like a poo on her shoe, in his own house.
    He deserves a medal for the bile and spite he has to endure.

    My partner she adores. Both are good, kind men.
    My brother is Mam's golden boy, she adores him. She saw him last July and Xmas. He beat his wife and children and has never kept his trousers zipped up. He thinks she needs company to 'cure' her.
    There is no justice.
     
  10. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    The problem I have is that it's my husband of six years with AD -and it has been a real struggle for my son who is still lives with us. He tries to understand-but it's not his dad and he sees me under pressure which upsets him, especially as I was ill last year and he was frightened that I was going to die.

    We cannot get a break as it's our home - it has really wrecked his teenage years as we can't enjoy life like we did before I remarried. He can't have friends round-OH reacts badly to any changes in his routine-and says he doesn't have a home. Not even able to sit with me in the lounge and watch films like we used to.

    I love both of them but my son certainly doesn't deserve this. He will leave home before a few more years have passed and I will never have that time back with him. Breaks my heart.
     
  11. saffy101

    saffy101 Registered User

    May 8, 2010
    9
    Ipswich
    The strain of caring for my grandma who has had alzheimers for over 10 years has torn my family apart. I always thought that the family members who still had their lives ahead of them were more important than my grandma. My dad has been grandmas carer and tended to all her personal hygiene issues etc. For a long time my mum resented the constant dirty washing and the round the clock care. My dad took the approach that grandma should be stimulated as much as possible and included in everything. I saw it nearly kill of their marriage - for around 3 years the atmosphere and arguments were dreadful. Dads behaviour became perculiar - manic at times. From not getting involved myself i got drawn in by sticking up for muyum and making it clear i thought this all consuming devotion to grandma - who did not know who anyone was and remembered nothing of how her day was spent - was in a way selfish. I should have known better than get involved - my mum changed her tact and subscribed completly dads approach to grandmas care. Between them they rewrote the history of how the care had been. Now i have been disowned and labelled a cold hearted person who would put family members in a home and throw away the key. I dont think this at all. I think alzheimers is the cruellest illness there is.
     
  12. Geoffrey

    Geoffrey Registered User

    Mar 15, 2008
    14
    Venezuela
    Relationships

    My partner and I looked after my mother with Alzheimer's without assistance for 5 years. For us we had little choice but to go it alone as we were not in the UK having opted to provide care where we happened to be, which was in South America.
    My mother came to us in the early stages where she was in the wandering phase, which progressed through other phases as the Alzheimer's progressed. Like many she became irrational and difficult requiring constant vigilance and attention.
    Providing care was a joint decision which we knew all too well would be demanding as my partner had managed a sheltered home in the past but we did not fully appreciate just what a toll it would take on us both.
    We made certain rules like having time to ourselves at the beginning of the day by rising early with a coffee in bed and watch Direct TV and talk for at least an hour before getting my mother up, washed and dressed for breakfast.
    We had routines (this helps to bring security to the person being cared for) that helped to organsie our day with certain tasks/responsibilities split between us decided from the outset by which one of us was best suited to the task. Cleaning my incontinent mother up was not something my partner was very keen on. Some responsibilities can be onerous and others disagreeable but one gets used to them.
    Due to the gradual build up of stress, which was largely subconscious, our intimate relationship ceased but not to the detriment of our overall relationship. This did not get back to normal for about two years after my mother died indicating just how deeply we were affected by providing everyday care.
    My relationship with my family (sisters and brother) disintegrated completely during the period of care to a point where recovery was impossible. This was due to their total lack of understanding of what providing care entails coupled with deep distrust and a high degree of self interest with respect to the family finances. It is my understanding this is not uncommon.
    It is our experience that providing care for any length of time will have a significant affect on both ones personal relationship and those of the wider family unless they are intimately involved and share in the ongoing task.
    Of course it could be that the care providers could become resentful of the other members of the family if they are left to provide without adequate support or they feel they have no choice. Fortunately we did not fall into that category.
    Four years on from when my mother died neither my partner or I regret having taken on the role of carer(s) and I know we gave my mother a immeasurably better end to her life than she would have had had she been placed in care home.
    In my opinion one has to have a good reason for deciding to dedicate years of ones life to providing care other than the person you are caring for was someone you once loved. I am sure some will take issue with me but the facts are that when Alzheimer's strikes, at some point that person will no longer exist and you will be providing care for someone that may not be to your liking. What will be your motivation then?
    We benefited financially by providing care as the fees that would have gone to the care home remained in the estate. Some might find this shocking but it is hard to see we could have maintained our commitment for so long without an incentive other than an emotional one.
    There are some incomprehensible rules regarding care in the UK in that relatives are not supposed to gain financially for providing it but if the person in care goes to a home then extortionate fees will be extracted for often poor treatment.
    If financial considerations are a feature of your decision then much of the cost of administration of the estate can be mitigated through ensuring you have power of Attorney or whatever the current system calls it.
     
  13. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,573
    Female
    Auckland...... New Zealand
    My husband & I have been together 25yrs and married for 21.
    We have 2 children 10 & 15.
    My husbands Mum passed away 25 yrs ago shortly after we met, and his Dad passed away 15 yrs ago shortly after our sons birth.
    He has always gotten on quite well with my parents, but more so my Mum who looked after our children from babies as I worked part time.

    We have the unusual situation where my husband was diagnosed with a brain tumour in 2004. 2 surgeries, chemo & radiation have left him with mild cognitive difficulties, short term memory issues and a changed personality. He had been in remission since 2006.
    My parents helped us immensely with our children throughout his many trips to hospital
    In 2006 we decided mutually that Mum & Dad would sell and we would build a granny flat on our property for them.
    Mum & Dad moved in, in 2008. (They are 72&75)

    Fast forward to 2011-2013 and what has been the start of Mums health issues, wih Chronic Lymphocytic Leukemia, and surgery for early stage bowel cancer ( all caught early no treatment necessary) and now dementia. Waiting to see a specialist at hospital for a formal diagnosis. GP suspects AD.
    My husband although at times gets frustrated with my parents (only because of his cognitive issues) he has been incredibly supportive.
    I feel guilty at the amount of time that my parents take of my attention at the expense of my husband and children. I am so thankful though that they live behind us and not still in their old home as I can well imagine I would be there almost permanently.

    My sister helps with Mum, doctor & hospital appts on the days that I work.
    She took my parents away for 4 days to her holiday home to give me. A bit if a break, but it did not go well with Mum becoming confused an disorientated.
    My brother flits in & out of Mum & Dads life, but doesn't really help, and it's all too much for him because he has "personal problems"........ Well we all have personal problems don't we!!

    My husband & are going on holiday for 5 days in a few weeks for our 21st wedding anniversary.
    My sister is having our children, and my parents to stay while we are away.
    Although Dad is making noises about staying at home :rolleyes:
    Hopefully my sisters place is still familiar with Mum and there are no issues.
     
  14. happisoo

    happisoo Registered User

    Dec 10, 2009
    72
    north wales
    I'm very lucky too- in the beginning my husband almost came up with the idea himself about having my mother come and live with us. We cared for her for 4/5 years and there is no doubt we had some hard times because of it. I would often spend time with mum just so i didn't have to deal with something to do with me and hubby. He was/is incredibly supportive and we did our best as a couple and as individuals. In the end she became too much for either of us!! But what I learnt was to be as honest and open as you can. We did loads of debriefing - especially at the end of the day when maybe stuff had calmed down. We also had different ways of dealing with some of her quirks which added a strain too. One of our ideas was to have a camera downstairs so that we could watch her from upstairs and be there if necessary in case. It allowed us time together. We also used to pull a blind down in the window between our sitting room and her hall which stopped her from constantly staring at us (and started her on a brilliant habit of talking to herself in the mirror!). Oh yeah - get a mirror - a big one worked wonders for us! I wasn't sure at first as it sounds harsh but these small practical things do help and I was very grateful for it on a number of occasions! Just take one day at a time and make space for the two of you. He's doing it cos he loves you xxxx
     
  15. sbrew

    sbrew Registered User

    Apr 26, 2011
    23
    chiswick
    How to grow white hairs before you are 50 - or - survival is the name of the game

    looked at this thread in the hope to find some advice on how to combine care and relationship - read your accounts with great interest but sadly no one here yet has to deal with anything like the madness that has been my life for the past 3 years - my partner (not married) for the past 17 years is the carer for his Mother with Altz/dementia -for the past 3 years - actually let me refrase that - my disabled partner with the new added hernia form 2 weeks ago is the official carer for his mother. I cared for my partner for many years with a lot of love and still do, now I also care for his Mother who lives alone in a 'sheltered' 1 bed room flat that for the past 3 years did not have a warden - only link line for emmergencies or communualactivities. My partner has 2 brothers (both married) and5 grandchildren (all grown-up) and 3 live 5 min walk from his Mother. We live 30 min drive and go to see her 5 days a week for 3-5 hours to keep her company (his job) and to clean, cook, wash, do the laundry and serve endles tea & coffee (my job) - one brother comes once every 3 weeks for an hour, the rest do not and did not see her for a long time, last time was 2-3 years ago when she sae the rest. Will not go into why they don'y bother - you all know the story. The point of all this elaborate long tale is to add that you have to be a real fighter and very strong indeed to maintain any level of relationship (and we do love each other madly). We both had to quit our jobs and now live out of carers allowance and disability alloance etc.. - My family is in Israel - have not seen them since Christmas they came to visit - I don't have time or money to go there. The council gives us 1 hour of caring per day - half an hour in the morning and same in evening to give her medication and tea - the rest is up to us. We had everything from break-ups, emotions - you name it but survived to tell the tale - so far so good, how long can we last like this - don't know - I know this is not a happy story but it needs to be told so that you know how hard it can get, be strong and may the force be with you :D
     
  16. malcia

    malcia Registered User

    Mar 4, 2013
    1
    Hard work!!!!

    I am in the position of caring for my mother and father in law. They both have dementia. Mum has been steadily forgetting for many years. But dad was just diagnosed in January and went from being ok (age 90) to not remembering what day of the week it was all in the space of four weeks. My brother in law lives outside London and my sister in law in Norwich. Both they and their spouses are retired and never lift a finger to help us. I have not had a day off since the 10th September and really feeling the strain now. Some days it is just one crisis after another then we go for a few days with things just rolling along nicely.

    My husband is still working so the burden of caring falls to me. In the last few weeks since they both need care most of the day, every day, ans sometimes during the night, I have been exhausted. I NEED A BREAK!!!! or I will be going under too. I had hoped to get away this weekend, but he is reluctant to ask his brother or sister, for whatever reason, to come and look after their parents. He will not even entertain putting them in respite care, for whatever reason, so again no break for me. I feel the outsider of the family and I really feel our relationship at this point is heading nowhere fast. He puts his family ahead of me at every turn and blames me when anything goes wrong. I am at the end of my tether caring for his parents and putting up with his moods. So if you have read this far into my rant. Thanks for reading. Don't let yourself be a doormat and take care of yourself by having a day a week off and at least a weekend a month off your caring duties. You need to care for yourself too, or who will do that for you if you go under with the strain of caring. Hope this helps.
     
  17. kingmidas1962

    kingmidas1962 Registered User

    Jun 10, 2012
    3,538
    Female
    South Gloucs
    Bear in mind I say everything below without the added dimension of dementia as my mum doesn't have it, my dad does - and this is about being 'too close' to mum.

    I never considered myself a private person until my mum and dad were both ill - dad has dementia and mum cared for him until a carer breakdown saw her in psychiatric care / respite and now in sheltered housing.

    Just before her total collapse she came to stay with us (myself, husband, 14 year old daughter) for a couple of weeks and it nearly killed me. We do admittedly have a tiny house, and only one large lounge/dining room - and we could not get away from each other. It was absolutely horrendous. Until that point I thought that my mother could never conceivably get on my nerves.

    From that point onwards I have fiercely protected my 'personal space' and that of my family. We are a unit that goes well together - my husband and I are not what I would call a close 'touchy feely' couple AT ALL but it works, and even though I have never felt that I had to defend my space against anything before, I do now. What has resulted is that although I am happy to visit her, go out for lunch - have her round to my house occasionally - I protect my family like a wild animal. I didn't think I had it in me!

    I take my hat off to those who share their homes / families / partners with people who suffer from dementia - I simply could not. Do I feel bad about it? Not now, no - as she is slowly but surely settling into her new life - but I did at first when it was clear that all my mum wanted was ME and she couldn't have me. I am already taken.....

    I thought about re-writing this as I sound horribly selfish - but have left it as it is as I can't think how else to say what I wanted to say!
     
  18. Butter

    Butter Registered User

    Jan 19, 2012
    6,738
    NeverNeverLand
    I think illness affects all relationships. Relationships change all the time, well or ill, too.

    All you can hope to do, I think, is make the best of whatever is happening. My husband was not able to talk about my mother (who had been ill most of my life) for the last three years of her life. The day she died, he shouted at our son for coming with me to sit with her while she died.

    This was because my husband was ill. He managed her illness fine until he was ill himself. And then he turned away. He could not cope. It is all he can do now to cope with himself. And he only does that in parts.

    I try to make the best of only having my husband in parts. I fail often.
     
  19. angelface

    angelface Registered User

    Oct 8, 2011
    1,086
    london
    Your post sounds so sad Butter. I guess that all anyone can do with this horrible disease, we can only appreciate the bits of the person's character we have left. I have never thought of it that way before, but you really have the right of it.

    Sending ((hugs))

    G x
     
  20. Night-owl

    Night-owl Registered User

    Feb 10, 2011
    22
    S. Lincs
    Counselling can be helpful

    I am very fortunate in having a wonderful OH. Mum has V.Dementia following a stroke 6 years ago. She is now 100, and living in a CH. She still tells me that he's wonderful, as she always used to, and objects if I ask him to fetch something from her room (I have mobility probs)., but he loves her too. He helped hugely when she lived in a flat near us too.
    What we've both benefitted from is the system of Carers' Support our County Council runs. A peronal support worker is available for telephone support, and a small allowance is paid for spending on a 'leisure activity'. the county isn't known for it's generosity, so it's worth finding out if yours offer this too...my GP was ignorant of it.
    We also made time for 'just us', and were careful to arrange domicilliary care for her too. Make sure you try to get respite care for your relative, even if you stay at home while they are in care. And if partner is willing, try couple counselling, or if acceptable, a pastoral worker at a place of worship...they often have training in 'listening', and these days shouldn't be pushy about attending their place of work!
     

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