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Feeling Guilty

I am new to this site, may I tell you a little about us,I have M.S, hypertension and small heart problem and carpel tunnel, I have beencareing for my husband for 2 years now, he has Parkinsons that has taken his legs, he now can hardly walk, he has a blood disorder, so is on life time Warfrin, last year he was diagnosed with Bowel cancer and had a colostomy in July of this year, he could not have chemo or radiotherapy because of his general health, he also now suffers from epilepsy, at present the cancer seems O.K. but has started suffering with blockages in his stoma through constipation, sing being in hospital this week his water works are playing up when he wants to go he will just do it, if he cant get to his bottle in time, I am sorry if you think I am moaning but sometimes I do feel so alone, and wonder what is coming next and am I going to be able to cope I think the medics think I am wonder woman nd no-one considers I have M.S nd am so tired sometimes, every day seems the same, please do not think I am a moaner I am 74 years old looking after a man of 75 who is totally reliant on me.

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Hello Lucy welcome to this community, hopefully by having the courage to reach out, you find folks here who may have similar experiences, and you won't feel so alone. You are definitely not 'moaning'! You are going through tough times, and we all need a safe place to off load. Have you thought about asking for help from carer agencies support, local community volunteer support and/or financial support? Your GP or local council may have contacts. It may help to emphasise with your GP and Health professionals that you are struggling and to remind them of your needs too. I know it's difficult sometimes to admit we need help, but you may find it makes a real difference, in helping you cope.

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I contacted social services for an assessment as advised by Alzheimer’s lady but was asked what help I needed now, otherwise no assessment at the moment.

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Hello Lucy you most definitely need help for your husband and yourself. Speak with your GP and maybe Social Services. It's good to be on this forum and chat with others. You are not moaning as have a lot to deal with. Take care xxxx

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Thank you, I know you are right I have managed on my own for the last two years, because my husband is a very private man and has such great expectations of me as I have always done it, my whole life I seem to have been the problem solver for the whole family,I used to be a hospital manager for 25 years and that was my role, I also think he may have memory problems , short term not uncommon with Parkinsons, I am expected to be carer, nurse, chemist, this is by the medics as well,I know one day I shall miss something, I think some of it is my own fault, sometimes I think I am super women, I think the crunch came on Thursday before they sent him home when they were discussing catheter, I thought, no,no,no. I am all ready dealing with his walking, , waiting on him hand and foot, also his stoma and many more problems, I shall refuse to look after this as well, I could feel the anger builing up inside of me, not to-wards my husband because I love him dearly but other people ,How can they expect me to look after that as well, I would not have a clue and I don't want to anyway. Do you think I am horrible ?

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Lucy you are not horrible in any way. You are struggling and the medical profession need to be told this. There is no shame in asking for help. Now is the time. Be strong and tell others how hard life is now. Good luck to you. Xxx 😘

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Not horrible at all. We all have a point where we have had enough. We all love our O H dearly but still difficult situation.

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Lucy73 -- I hope that perhaps with the assistance of a social worker, you will start considering placing your husband in a skilled nursing facility before things get more difficult than they are. I wasn't able to make that decision on my own. I was able to mobilize my resources and do it only when my husband's home health nurse chose the most appropriate nursing home and had the admission papers ready to sign that I was able to go through with it. If I had remained his caregiver, I would probably be dead by now.

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Thank you for your support, I know out there are thousands of folks like me, ome very much worse off, when two years ago my husband was diagnosed with Parkinsons, a horrible disease, I went on a course for carers at our Local university, all were women , only one man, there were two types of folk there, one group were so full of resentment, the other were accepting their roll but had no life, I prayed to God I would never get to resent my roll like the first group, but I do now understand where they were coming from, they felt their lives were just carers, I never wanted to fall into this group, because some of them were so bitter, long term it is hard being a carer, I have had a good life and am grateful for this but I have such admiration for the folks who are a lot younger than me give up careers and devote their lives tolooking after their loved one. My husband and I have been married for 52 years, had a good marriage are very lucky, I know we are living on borrowed time as his cancer can come back at any time, they could not treat him after surgery, because of his other problems so we went for quality rather than quantity,that is why I I will not put him in a care home he will stay with me, its nice to know that I chat to folks with similar problems who understand, thank you.

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Hi, I have been in your situation for the last 10 years.Brian has Parkinson's and mobility problems.It is hard for us both.He is incontinent now. Not able to do anything other than watch T.V. We have celebrated 63 years this month and had a lovely retirement. During the good days, we both had different interests. I joined the local W.I. Those contacts have kept me going. I do get out to various events. I was able to get support, gardening, cleaning, and laundry. I pay for carers to come in to see to Brian's personal needs; wash him put him to bed. Not been an easy journey. However, we are both still alive. I have worked hard at finding out what is on offer. It is a nightmare locating support. It took me a very long time to get to this stage in our lives. To begin with, it was like a bereavment.Keep going you will win with your positiveness and past experience.

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Hi Lucy.

You've come to the right place, because no-one here will judge you or think you are selfish. The only person who is judging you is you, and honestly, there is absolutely no need. Caring for someone is a really challenging thing to do, even when it is someone you love dearly, so please don't beat yourself up over anything you perceive as a shortcoming in care.

Just tell yourself that you are doing the best you can and although I know that feeling alone is something that many carers suffer from, try to comfort yourself with the thought that you are actually the only real practical help for your partner that he has.

It won't stop you from getting weary, or getting bad tempered or resentful at times. Just know that these are all normal human emotions in someone who is under great strain. We can all get irritated and fed up.

You say you don't know what's coming next but be open to all possibilities, including his going into a nursing home if it does eventually all become too much for you.

That can induce the biggest guilt there is, but the point is that there is no use in having a 'broken' carer, so if it comes to that, it's better to be a supporting loved one to someone inside a nursing home, than a carer at home who can physically and mentally no longer cope.

But meantime, I'm sure you'll find some support and help here if you reach out for it, so welcome once more.

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Hi Lucy at the moment I am a carer in a care home shortly I am giving work up to care for my husband who is poorly with a heart disease he also has caparal tunnel in both of his hands as well as lumba spine with 2 discs out of place xxxx

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Poor poor man he must have dreadful pain, you must be a special lady to be a carer for a job I have every admiration for you, I am 73 and have had a good life, do from the start work out time for your-self don't fall into the trap I have, its my own fault, I should have been stronger nd made time for my-self and my own health needs it is such a easy trap to fall into when you love someone, they become so dependant on you that you disappear I don't know how old you are or what your personal needs are but try to involve other folks, chat any time I have only just joined this site but I think it will help.

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Hi Lucy I am aged 54 & my husband is 59 as well as my husband being poorly my step son has ADHD & we have been told that he has brain damage & my step son is 26 years old I have 2 grown up adults from my 1st marriage & have grandchildren I am new to this site as well

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I have one daughter aged 46 and 5 grandchildren aged from 30 26 24 19 and 17,4 girls and 1 boy they are grand kids two work at our local hospital, one at Coventry university just finished 1st year of nursing degree, and one at colledge, my daughter lost her husband when he was 25 leaving her with 3 young kids with cardiomyopathy so far the kids have not inherited the gene we are very lucky the other two father was a no good waster so we have helped support them for the last 30years. Over the weekend we have got to-gether and my daughter is going to help, she cant claim carers allowance because she does too many hours, so we are going to pay her, my husband will accept her help in the house rather thank a stranger, at the moment he can walk, but I know if he goes off his feet completely I shall need professional carers, his walking is dreadful but I can get hi m down stairs on his stairlift to his chair where he sits more or less all day, at the moment even though he is palliative care he seems stable it is his Parkinsons and Epilepsy that cause the problems, he had another stay in hospital last week when his stoma got blocked but is now at home. We sound like a disaster don't we, You have your hands very full for a young woman, please make time for your-self, you are important and have a life ahead of you, have you got friends? do you hve a social life of any sorts I do hope you do. one thing is very important don't loose your sense of humour, if folks offer to help let them, if they offer to do jobs let them, who does your garden, sorry if I am nose don't mean to be but I worry about folks like youxx

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I have my friends husband how much it would cost for him to do it

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Oh Lucy you are so brave and not being at all selfish. Please try to get help. You say your husband is a private man, but how would he cope if you had a breakdown? Your first priority is to keep yourself healthy. I 110% understand the resentment. I know you say you love your husband but is it time to start thinking of a hospice? you are not superwoman. You have my admiration and total sympathy.

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What about respite care, if only one day a week, to give you a break? Or carers to come in to help you? Your husband might accept a male carer?

You are doing so well but you need to think of yourself too.

Karen

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This was suggested by the Hospice that are keeping an eye on him BUT he would not hear of it, he does not want to be around other sick people and listen to their syptoms, the only thing he ever moans about is his Parkinsons which he hates because he says it has robbed him of everything, his cancer he does not talk about, this is why when he goes into hospital he can be very difficult he does not want to be there, after his surgery last year when he was told they could give no other treatment i.e.hemo or radiotherapy he stated he did not want any further surgical intervention, last week he had to go in because he had a stoma problem I do know in the future he will have to accept professional care because as I have always told him if he goes off his feet altogether I will not cope.. My husband has always been a careing loving man but illness has changed him, he could turn his hand to anything, but hving to watch me doing things he has always done upsets him very much, bless him.

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Well what a lovely morning I have had big row with my sister about his favourite subject HR and what he thinks about it, its because her daughter is a HR manager,I know now that Bob has some sort of dementia coming, I rang the hospital and asked them to read out the letter they sent out to the GP, I tried to explain to my sister that he has one more problem to cope with all she could say was he was very hurting, I told her they can fixate on one subject, she did not want to know, I tole her to go on the dementia site and read all about it, how there are many types, in the end all she could say was she did not have time, and that when she told her daughter she was very hurt, this has upset me so much, if my own sister cant understand God help us. I think a lot of it is she is only 56 but her husband is 74 but has fantastic health, she does not realise how lucky she is, She forgets this is the man who has helped her so much over the years, things do not remain perfect forever and can change overnight, I have never asked her to do anything for me and don't want her to now as she tells me she has so little time, whereas her husband is lovely and will help Bob if he can, perhaps its me.

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Lucy, what on earth are you managing to make yourself feel guilty about? Stop it at once! Your husband, you, me, everyone has our own set of needs and none more so than the carer, who is, after all, fighting on the front line and freeing ups medical and social services for someone in a less fortunate position than your husband is, with no family carers.

Guilt is something our generation has somehow gifted itself. I hear it all the time on TV when an elder is accessing services. "Sorry to be a nuisance", we all bleat. We have to learn not to do it because the generations that have come after us take as much help as they can get and don't feel a bit of guilt. And neither should they, unless they are actually abusing services.

Understandably you are going to get very weary and lonely at times. Caring can seem like a thankless task at times. Sometimes, through their own set of problems, even the cared-for seem to feel resentful about you.

But what you are doing will one day reward you with a feeling of peace and a job very well done. And that comes from having taken the responsibility, whether that's because you love the one you care for, or do it because you know that someone has to take the responsibility.

Not for you any guilt when the day comes when the caring stops. Others will then have that burden whilst you will be able to say "I did what I could and should have done".

Comfort yourself with that thought in your darker hours, and also ditch that burden of guilt and take every scrap of help that you can get, whether it's from friends, family or medical and social services.

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