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My worst nightmare - Carers UK Forum

My worst nightmare

For anyone who is bereaved or no longer providing care.
I've not posted to the site for a long,long time now. I won't go into details but circumstances were difficult. I feel a bit cheeky for post after such a long time but here goes:
My dear mum had suffered decreasing health for several years but over the last 18 months she became completely immobile and had carers in 4 times a day. I am in full-time work in a pretty stressful job but my being there meant all the differance between her being able to stay in the home she loved or going into a care home which she dreaded.
I always promised her I would not send her into a home. 10 years ago my job role involved visiting care homes and, having seen some awful ones I vowed there and then that I would care for her if & when the time came. Sometimes things could get stressful at home and I admit I used to get short with her if she called me a few times in the night or the place was in a mess. I have a history of stress and anxiety going back years and could sometimes be impatient but I would always apologize and say it wasn't her I was upset with but the circumstances (which is true...I always loved her and always will).
The point of this message though is that my worst nightmare came 7 weeks ago when she passed away peacefully in hospital after an infection turned out to be pneumonia.
I stayed until the end of visiting the evening before and held her hand talking to her but she
was confused, repeating herself and drifting off to sleep momentarily. When it came to time to leave she asked me if she would be going home and I said of course she was but to concentrate on getting better. I then kissed her on the forehead and told her that I love her.
5.30 the next morning the phone rang and I knew what it meant.
My grief was (and still is) all consuming and although I've started seeing a wonderful counsellor from Cruse I can't lose the feeling of guilt over how I was sometimes impatient and short with mum. My counsellor says guilt is a normal part of the grieving process but I can't take that in and worry mum thought I didn't love her. She did go home in a way though as I asked for the cars to start from the house. I miss her terribly and although I function, sometimes enjoy things and went back to work after 2 weeks I just cannot get past this.
My cousin spoke to mum 2 weeks before she died and she assured me mum was happy and said I was really looking after her.
Does all the above seem familiar with any of you former carers? Sorry to go on and on but I meant to keep his short but it just kept spilling out.
Hello Matty,

Firstly let me say how sorry I am to hear of your loss, but reading your post gave me a definite sense of 'deja vu' and takes me back to 6.30pm March19th 2012 - the last time I saw my Mum alive. She too was in hospital after a protracted stay which started with her being initially admitted with the norovirus, she then contracted MRSA. The last time I saw her she was due to be discharged the following day and the last thing I said to her was "you're coming home tomorrow Mum, I'll be in to collect you about 11 - love you lots" and I kissed her goodbye. At 3.30am on Tuesday 20th March I got a call from the hospital to say that Mum had passed away at 3.15am.

Even now over 2 years later I still get feelings of guilt that I wasn't there with her at the end but looking back I think she had just 'given up' and decided that she just didn't want to be ill and confused any longer (she had Alzheimer's). I believe that she knew that I loved her and cared for her - she was my best friend as well as my Mum and I know that I will always miss her. I accept that I will always probably feel that I didn't do enough - but 2 years on I'm coming to terms with those feelings and it is getting easier.

Because of Mum's dementia and her subsequent confusion there were lots of times when I "lost it" and, like you I still feel the guilt that maybe she thought I was 'angry' with her when in reality I was angry with the disease that took my Mum away from me bit by bit. Overall, though, through all her confusion as to whether I was her daughter, her sister or her Mum I think that she knew I was someone who loved her; who cared for her deeply and kept her safe.

Matty, there is light at the end of the tunnel - 7 weeks is not very long in the grief calendar. Some people get over a bereavement in a few months, for others it can take much longer - everyone is different and everyone's experience of grief is different, there is no one size fits all; no set timescale. All you can do for now is to take each day as it comes, be kind to yourself. You know that you loved your Mum and I'm sure she knew it too.
I was widowed eight years ago. Grief is awful and healing at the same time. It feels horrible, is horrible, but only when you have experienced it properly can you move forward in a healthy fashion. My husband died with no warning, I was shocked, and angry, and guilty that I didn't realise he had heart problems, a real washing machine load of emotions. The brain will go over and over again, until it has made some sort of sense of what has happened. Allow this to happen. Tears will flow, especially when sorting out personal effects, but let them flow. Any major life change is difficult, and you will have many changes, like ripples in a pond. Just take things step by step. If you don't feel in control, just take things more gently, at a pace you feel comfortable with. Take comfort from the fact that you did your very best for mum. You were not responsible for her illness, or the fact that her illness became too difficult for one person to manage. Every time the nasty niggly thoughts come into your head, just repeat to yourself that you did your very best. Feel proud that you cared for her so long, and so well. Remember your cousins words when doubts creep in. Mourning takes a long time. There may be more bad days than good days to start with, but gradually there will be more good days. Take care of yourself now, as any mum would wish for her offspring.
Thank you so much for your kind words SusieQ and Bowlingbun.
I forgot to mention that I visited mum with my brother during that last afternoon as well and we were told by the doctor that they doubted mum would survive this admission. Those words came like a blow to my stomach and I returned to her bedside for a while but she was sleeping. My brother insisted I go back to his house rather than go home but when we got there 1/2 hour later I knew I had to go back for the evening visiting session. I drove back and spent the time holding her hand as I said.
I am so grateful that something was willing me to go back as I managed to talk to her whilst she drifted in and out of consciousness and when I kissed her forehead as I was leaving and said I love her she mumbled something. I didn't ask her to repeat it as I didn't want to distress her but I pray it was her returning the sentiment. She was the sweetest, kindest person and until her final days was so sharp mentally but was trapped in a frail body. I just have to try and remember she was an intelligent, loving lady who had forgiven me many things over the years. A mother's love is unconditional after all (as the hospital chaplain reminded me) and I did indeed do my best and always rang her if I was away.
I just wish these doubts would stop coming.
Oh Matty, I'm so sorry you've lost your mum, your post had me welling up as I read it.

It's so, so normal to go over everything with a fine tooth comb when you lose someone and equally just as normal to occasionally be a bit short or snappy with people, however much you love them. I love my son to bits but there plenty of times I tell him off and lose my temper with him; no-one's immune to being tired, stressed or under the weather and all of those things make people snap a bit. Your mum will have known always that you loved her as much as you did and on some level she'd have known you were there holding her hand that night. You will get past those doubts eventually, it's early days and losing someone like that takes such a long time to accept and come to terms with. Be kind to yourself, none of us have lived perfect lives and never done anything that we regret, it's what makes us who we are. It sounds as if your mum did a really good job with you as you obviously looked after her so well and she'll have known how much you care. I'm sorry for your loss.
Thinking of you. Take time to heal but hold on to the Love you had for mam and her for you.


A ship sails and I stand watching till she fades on the horizon, and someone says, "she is gone".
Gone where?
Gone from my sight, that is all; she is just as large as when I saw her...
The diminished size and total loss of sight is in me, not in her, and just at the moment when someone says "she is gone", there are others who are watching her coming, and other voices take up a glad shout, "there she comes!"...
and that is dying
Hi matty, I remember you and often wondered what had happened. Dont feel bad that you haven't posted for a while. I am so sorry for your loss. As others have said, this is no time at all and your emotions are bound to be all over the place. As I now have a mum with Alzheimer's I know how hard it must have been looking after her and working right up to the end. You have done everything that you possibly could, don't feel guilty that you snapped a bit at her, she would have known that you loved her. What a blessing that you went back that last time.
Matty, I'm so sorry for your loss.
It's important to remember your mum as the strong individual she was.
I also beat myself up about snapping at my dad. The nurse in his care home reminded me that I was only human; that I needed to put things in balance and weigh these times up against the things I'd been able to do for Dad.
My dad lost his power of speech in the last week but I could see from his expressions and actions that he understood every word I said. I'm sure your mum would have heard your last words of love too.
Matty, Your feelings and thoughts are quite normal, you have to live with as part of the process of moving on, it is hard and every now and again you slip back, keep with it and I am sure like others, myself included, you did everything in the right spirit and probably had moments of frustration, maybe a loss of temper and various other temporary shortcomings but at the end of the day you did it all for the right reason and deep down we have to think that the person being Cared for really did appreciate it. I looked after my wife for 29 years, had to give up a well paid job to do so, all plans for the future went out of the window but I have no regrets and like you I vowed that my wife would never go into a home, it was hard at times but given the choice I would do the same again, my only regret is that we never said goodbye as she was gone in a flash as she was being wheeled by a Carer in her wheelchair. Condolences Matty but take pride from what you did.