Carer guilt seems rampant . We all are in a job we did not count on having signed up for. Caring for seniors with varing degrees of dementia, and other age related illnesses and effects of years of medications that cause parkinson like symptoms etc. Many of deal with multiple diagnosis as we deal with medical and emotional issues of our own. We all loose our cool at times and have trouble adusting to the new role of care giver.Our loved start to treat as hired care givers become very centered around their own needs. We need a place to vent , cry , scream without judgement. We need a place to be supported no matter what. Group hugs and others who go through the same things who can share suggestions and resources that work for them. You are a good carer or would not be feeling guilt if you were not. You would nor still be there if you were not. We can all be better carers together. Noella

16 Replies

  • Noella, how I agree with you, My husband has a 28 year old brain injury and now has dementia. When he first had the injury I worked with him to enable him to change from a near vegetable existence to someone leading a reasonably normal life. As soon as the onus was on him to keep up the improvement, he stopped doing anything. I absolutely hate the life I have now, it is like having a child around but at least you know a child will grow up not get worse. All the things I thought we'd have in our retirement have gone. I have tried holidays - he gets lost every time he moves, going to the cinema, theatre etc is no good as he falls asleep or wants to go to the toilet and gets lost. I plan to go out (he can normally be left for a few hours) and then he will do something dreadful and I have to stay in. This is not what I signed up for. I know marriage is supposed to be 'in sickness and in health', but I think mental illness is something worse. I know that he will have to go into a nursing home before too much longer and that will mean an end to the savings and our house that i wanted to pass on to my grandchildren. I have a 99 year old mother in a care home too, some days I wonder why I bother to get out of bed.


  • Hi Jan I am new to this forum I am on Fibro forum and thyroid forum at the moment as both affect me but I've not come on to talk about me just to give you an outline.

    Really sorry you are going through this had a problem with my dad but his was alcohol - I know it's not the same thing but my husband and I used to come home from work won't say what the loo looked like leave that to your imagination and we'd have to clean up after him before we could eat - he collapsed in the loo in early hours of morning we got him up called an ambo - we were due to go to Florida on holiday but hospital wouldn't let him out until he had care luckily we managed to get him into a nursing home - we got back after a lovely holiday much needed - and I didn't want him back home felt so guilty but we brought him home - he had to have a major op on his stomach not long after - we had just got home after visiting him and got a call to go back as he'd deteriorated when we got there they were moving him to ICU said his lungs were in a bad way due to his smoking - we visited everyday and we'd get the paper as he loved his little bet and football Sony husband would read the results and what was happening in the horse racing world he was on there for about 2 weeks and was transferred to HDU and was on there for about 4 weeks whilst on there we would get calls in work to come in as he wouldn't allow staff to shave him etc only my husband - where we worked they were very understanding - discussing with docs it was a case of him coming off the meds he'd been given plus the added problem of the drinking - we would tell him what he'd gone through because being under the drugs he would've had no memory of what had gone on.

    He was eventually moved to a main ward for about a week - we discussed about moving him downstairs as was worried about him falling down the stairs once we got back to work he agreed and we moved a small divan down for him - put shelves up for his books got him a small tv for when he was in bed etc - we both took leave overlapping each other so we could be there for the first two weeks of being home - I went into his room to change the bed and what did I find half bottles of whisky stuffed inside his pillow cases - found out he had asked neighbour and friend next door to get it for him - pleaded with him to not do it anymore as worried what could happen whilst we were at work when he went to loo upstairs - this kept happening until in the end I broke - phoned social services and asked them to take him for my sanity which they did - not saying it was easy afterwards when we would go and see him - there was a rift and I could feel it we'd hug and kiss but not the same as before - I felt guilty but free all the emotions going and I loved him dearly and still do even though he's no longer with us - he died in 2001.

    So I hope that you can find some peace once you decide what you have to do. Take care hugsnkisses coming your way. 😘😘😘🤗🤗🤗

  • I am new here too, I usually post on the Headway forum for brain injury people. Thanks so much for your support, it is nice to know that I'm not the only one overwhelmed by caring.

  • Where are you located in USA or UK ? I am in Alberta Canada. The resources are under different departments in different countries . If you tell us where you are from people from around you may better kiw your options. So far I seem to be the only Canadian on here. The issues we all face regarding care giving are very similar across the world. We can support each other. We are each others life line . God bless you both wirh strength to face each day.

  • I am in the south of the UK, about 1 hour from London.

  • Dear Jan, My husband is I late stage Parkinsons. I am fighting a stage four breast cancer that has gone to my bones. Have broken vertabrae. I had to retire early 10 years ago to look after my husband. After using up our savings we moved closer to our children and grandchildren. We purchased a bungalow and remodeled it. We made a suite in the basement and rent that out .Once I turned 65 and my old age pension kicked in I would have been disqualified for a lot of seniors benefits due to the rental income. We remortgaged half of the equity in the house and now can claim half of the interest and half the interest and half of all our utilities and property tax and any other repairs insurance and other expenses in keeping a home. After those deducations we qualify for all benefits and the cost share exemption on medications and medical supplies. This has made it possible for us to stay in our own home and renovate for mobility. We got a porch lift and a wheelchair van. We also qualified for grants on the outside lift and a ceiling hoist and a manual wheelchair. It is much cheaper staYing in our own home than paying for both of us to live in a nursing home and me in a lodge. Mainly we had to find a way to stay together. We are funded for self managed care by Alberta health and can manage with our carers coming in to get us going 3 or four hours each mornING and in the evening we get an hour of care to put my husband husband to bed. It leaves me with a lot of care giving but it is quite manageable most of the time. This is probably too much information but I wish I had known about all these options before we got to this stage . It seems a lot of this formation is a best kept secret . All services are under different programs both federal and provincial very few people know about all of them and how to coordinate between them. It was a full time job sorting it all out. Hope this gives some of you something to think about so you can make informed decisions.

  • Noella21 you are an inspiration coping will all you are going through, you are right though it's the same over here no one tells you anything when you are a carer you have to find things out for yourself which makes everything so difficult, caring is such a hard job and it comes to most of us at sometime in our lives with elderly parents or partners but we are never prepared For how it changes our lives , good luck to you and take care

  • Your words are my life. Thank you for making me feel normal and not alone. Hugs back to you.

  • It's a horrid thing to be a constant carer, but how nice to be able to admit to others how hard it is. We don't want to keep moaning to friends - or they wouldn't want to be with us, no one understands unless they have been there too. I have just spend half an hour watching my husband attempt to make a cup of tea. I saw him with the kettle at one point but no tea, cups or anything materialised. I know I should be patient as he doesn't want to be like this but I just want to scream and throw things and most of all LEAVE!!!

  • I know! I care for my father (advanced dementia) and my husband (PSP). Me. His family will call but no one offers a respite. Most of the time I'm okay but some days... I wish people would understand I'm greiving. Every day. Only people here understand.

  • Isn;t it difficult. I want to be normal like other people with a normal life. As you say, there are some days.. .... My family do offer occasional respite but I am afraid to allow it now. Four months ago my husband had some sort of brainstorm. He was late, in a real panic, very stressed out. He wanted to come down the stairs, just as I was going up and he saw it as some sort of threat, didn't see me - just an obstruction. He kicked me down the stairs with both feet, then kicked me for ages when I was lying at the bottom. i had massive injuries including a broken collarbone, punctured lung, ribs, etc. He had absolutely no idea he had done it and he is normally so placid. He was arrested but not charged as they realised he has a brain injury. I am scared that if he gets stressed when staying with family, he might repeat it and I cannot risk injury to anyone else.

    When his brain is Ok he is such a kind person, the sort who helps old ladies across the road, etc.

    Do hope tomorrow is a good day for you, if so, make the most of it. They can be rare"


  • Exhausted -- I'm concerned about the kettle incident because of the possibility of fire or injury from scalding water. Although my husband had dementia, he decided to broil a steak in the oven. He placed the raw steak on a lightweight cookie sheet instead of a heavy broiling pan that had slots for fat to drain into the lower section. The steak went up in flames. Fortunately, I was nearby and able to contain the fire.

  • Can you remove the fuses from the stove ? Or do you have gas? would he be able to figure it out if your removed the fuses or turned off gas to the stove when you go out? It becomes very challenging. my husband is no longer able to do anything for himself. In some ways it is easier . R cant burn the house down but than i worry if a fire starts how would i get him out if there was a fire ? it takes so long to get him on the hoist and into his chair and than out on the porch lift. We do live close to the fire department. I have to believe they will get here in time.

  • Well said, Noella.

  • I have just spent 5 hours in the hospital as my husband had another 'episode' where he had some sort of fit, was unconcious and it was very frightening. This is the second time it's happened - apparently it is caused through stress!!! I am feeling very uncharitable at the moment - I have constant stress being his carer but I don't have the luxury of a collapse, I just have to carry on. I am sure i am really evil thinking like this, but I have had enough! He has a brain injury (self inflicted), early dementia (following the brain injury) and blood cancer (probably also caused by the original problem), I just want to go to bed and sleep for weeks then get up and have a normal life. Is it too much to ask for?

  • exhaustedwife IT sounds as if you are at rock. bottom at the moment, do you get any respite at all, I think you need some time alone, have a chat with your Dr about respite care. When I looked after my Mum who had vascular dementia I got to such a bad state i ended up in hospital having a blood transfusion as I'd become so aneamic through not looking after myself which caused all sorts of problems.

    I have to say it's very very difficult being a carer I know, if you're not there 24 /7 you feel guilty but you have to have your own space or you'll crack up, my Mum died a few years ago and I miss her every day and I wouldn't have had it any other way. Take care