Still finding if difficult to come to terms with mum's illness

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hi Jezzer
Just wanted to say that I too remain distressed by mum's condition - I find that her being in a nursing home doesn't stop me thinking or worrying about her. However....if I imagine trying to care for her in her own home, I know that a) I couldn't physically do it, and b) she would have much less care overall, as she really needs 24/7 attention.
As to feeling like an alien, I too feel that way, even after mum being three years in a care home. Somehow (not helped by my own poor health), I've never quite managed to feel fully part of society again. Some days are better than others.....I can only suggest you keep trying ( I like the Japanese method) and remember, you are definitely not alone
Lindy x
Thank you Lindy. Why oh why do some people still think now your parent is in a home you can "enjoy yourself". Actually had that said to me recently and I could have screamed. I do appreciate your message and I will indeed keep trying. Bless you.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hello @Carmar ! Lovely to hear from you. You were so kind and helpful to me when I got in a "pickle" trying to post a while back! I will never forget how patient you were with me and really, it wasn't your role to take on "admin" work(!) but you did. So, Thank You once again. And now I want to say another Thank You for sharing about your dear mum. Is she out of hospital now and how are things? Responding to you gently whispering "Mum" is most definitely a sign of her love for her lovely daughter. Before mum became ill, she would tell people how lucky she felt to have a son and daughter who looked after her so well (much to our embarrassment!!! ). I always tell her I love her when I leave the home and, sometimes, she responds with a little smile. I'm sure she knows how much she is loved and I believe she loves us too. This really is a difficult time but it's just the same for so many folk and, certainly for me, TP helps so much and I hope I can help others in return. This is such a devastating and cruel disease and the effect on families is terrible isn't it? But what can we do but stick with it and somehow keep going? When I look back on everything mum has done for me, where else would I be but spending as much time as I can with her? Please let me know how you are? Bless you and a hug is on its way to you x
 

Scouts girl

Registered User
Jan 18, 2017
306
0
What is it with people who think that once our loved one with dementia has moved into care we can feel relieved and go on with our lives without having the worry of hands on caring. I lost my lovely mum to this dreadful disease last November after having to move her into care as I could no longer solely look after her at home. Did it get easier for me? No it definitely didn’t, I was overwhelmed with guilt that she was not in her own home and that I did not get the chance of talking to her about the reasons for her moving to a care Home. She was so unhappy and didn’t settle even though the care she received was excellent to the end. I visited her every day in the year she was there and would come home and dissolve into floods of tears that she was so unhappy and watching her deteriorate day to day. My health suffered from the worry of seeing her so distressed on a daily basis. I didn’t want sympathy just for people to understand what it is like to see how our lives are affected so much when living with dementia. I miss my mum terribly and still feel the guilt that as an only daughter I could not give my mum the care at home she wanted and deserved. People need to realise how Carers lives are totally absorbed whether we are caring ourselves or having to make the awful decision to move our loved ones into specialised care and understand that no it doesn’t get easier.
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
Hi Scouts girl
I am so sorry to hear you had such a bad time after your mum went into a care home. Like you I found the decision probably the hardest of my life, and again like you, knew that as an only daughter I could not give mum the care she needs and deserves. My mum is still with us at nearly 97, and I am torn between dreading the day she goes, and sometimes feeling quite settled in my mind that at least she'd be released from her torment (for that is what it is).
Like you, my life has been totally absorbed by mum's need for care. Only another care need (eg my toddler grandson) seems able to distract me.
I think you have to have been there to understand.....thank goodness for all the great people here on TP
All the best to you
Lindy x
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
What is it with people who think that once our loved one with dementia has moved into care we can feel relieved and go on with our lives without having the worry of hands on caring. I lost my lovely mum to this dreadful disease last November after having to move her into care as I could no longer solely look after her at home. Did it get easier for me? No it definitely didn’t, I was overwhelmed with guilt that she was not in her own home and that I did not get the chance of talking to her about the reasons for her moving to a care Home. She was so unhappy and didn’t settle even though the care she received was excellent to the end. I visited her every day in the year she was there and would come home and dissolve into floods of tears that she was so unhappy and watching her deteriorate day to day. My health suffered from the worry of seeing her so distressed on a daily basis. I didn’t want sympathy just for people to understand what it is like to see how our lives are affected so much when living with dementia. I miss my mum terribly and still feel the guilt that as an only daughter I could not give my mum the care at home she wanted and deserved. People need to realise how Carers lives are totally absorbed whether we are caring ourselves or having to make the awful decision to move our loved ones into specialised care and understand that no it doesn’t get easier.
Hello @Scouts girl Firstly, I am so sorry about the loss of your dear Mum. Of course you miss her; it's not even a year since she passed and anyway, there is no timeline for grief. I lost my partner (not to dementia) suddenly 18 years ago and found I never "got over it", just learned to live with it. Until I came on TP, I thought there was something wrong with me because people said "Oh you can get on with your life now" or "you don't have to worry now as she's being looked after". Yet I was in pieces. Then, thanks to TP, I found others who felt exactly as I did. Unlike your mum, mum settled immediately - to my amazement - and has never mentioned coming home. She's loved being there and the staff are great and so fond of her. She's sleeping 90% of the time now and a few weeks back the doc said she was in the "final stages" but this could go on for, well, we just don't know. Her wishes are she does not go into hospital and that she will come to the end of her life in the home. I suspect things will become much worse, unless something happens suddenly. Like you my health has suffered and I get by on anti-depressants. I take strong painkillers for a spinal problem that resulted in my having to take early retirement. I can't remember when I last felt well. Like you, I don't want sympathy, just understanding that because a parent goes into care, all the stress and worry doesn't go away. Mum is on my mind constantly which I know you will understand. One thing I would say is you should not be carrying guilt about not giving your mum the care at home she wanted and deserved. How could you possibly do that? You couldn't and had no option but to find a care home. I would never dream of expecting others to hold the same beliefs I do. I'm not a churchgoer but I do believe in a higher power though we are most definitely not on good terms right now! However I believe this life is part of much more and another stage awaits. With this in mind I believe your beloved mum is in a happy place now and that she knows you did everything you could until, like so many of us, a care home was the only option. Thank you so very much for your message. These remain difficult days for you - another thing some people don't/can't understand. You are still, understandably, suffering and I send love and hugs to you. PLEASE keep in touch; I'de honestly like to know how you are. Take care x
 

Scouts girl

Registered User
Jan 18, 2017
306
0
Thank you Lindy50 and Jezzer for your kind words and my thoughts are with you both at this difficult time. Posting on TP has been a godsend for me these last couple of years and it is comforting to know that I am not the only one going through this grieving process and the overwhelming feelings of guilt which I have. I know it was the illness that was making mum so unhappy and distressed but it was so hard watching her struggle day to day. It is a form of relief when their struggle comes to an end but I think it will be a long time before I can overcome these feelings of guilt that I have. Hopefully one day will come when I can remember my lovely mum with more smiles than tears. My friends, family and Carers groups have also been a great support for me and please too keep in touch to let me know how you both are. I wish you both strength. Take care xx
 

kindred

Registered User
Apr 8, 2018
2,937
0
Oh how lovely @kindred!!! Well I am somewhat confused about my darling mum. When the doctor saw her last, he said it appeared she was entering the final stages of this hateful illness. Today she did not even open her eyes and just kept shouting her name over and over. She also turned her head in my direction and shouted "go away, let Ena sleep". Even holding her hand seemed to agitate her. I spoke with the Deputy Manager yesterday who is lovely. She is also an experienced Dementia nurse. Whilst mum has clearly deteriorated, she says the end is nowhere imminent. I feel embarrassed as I've led my friends here on TP to believe we were looking at a matter of days, but this was genuinely what my brother and I believed. Sadly I think she is going to get even worse. As I've said so often, we love her dearly and wish she had a fair quality of life but the truth is she hasn't and as so many of you know, witnessing this decline is heartbreaking. So we will continue to support her as best we can and hope she can feel the love we have for our little treasure. Thank you so much for your continuing love and support x
Darling, this is an ordeal for you, I am so with you all the way. I am sure she can feel the love, somehow, we just don't know. I know you love her so very deeply, oh my dear, this is so heartbreaking. I am glad the Deputy Manager is an experienced dementia nurse. She will know and understand the best care and be able to support you. All love and thoughts. Thank you so much for posting. Gx
 

kindred

Registered User
Apr 8, 2018
2,937
0
What is it with people who think that once our loved one with dementia has moved into care we can feel relieved and go on with our lives without having the worry of hands on caring. I lost my lovely mum to this dreadful disease last November after having to move her into care as I could no longer solely look after her at home. Did it get easier for me? No it definitely didn’t, I was overwhelmed with guilt that she was not in her own home and that I did not get the chance of talking to her about the reasons for her moving to a care Home. She was so unhappy and didn’t settle even though the care she received was excellent to the end. I visited her every day in the year she was there and would come home and dissolve into floods of tears that she was so unhappy and watching her deteriorate day to day. My health suffered from the worry of seeing her so distressed on a daily basis. I didn’t want sympathy just for people to understand what it is like to see how our lives are affected so much when living with dementia. I miss my mum terribly and still feel the guilt that as an only daughter I could not give my mum the care at home she wanted and deserved. People need to realise how Carers lives are totally absorbed whether we are caring ourselves or having to make the awful decision to move our loved ones into specialised care and understand that no it doesn’t get easier.
Oh my dear I do understand, I know how you must miss your mum. I know it doesn't get easier. My OH is now in a good nursing home but all my life is bound up with him still and probably forever. Our health is bound to suffer physically and mentally. All thoughts and fellow feeling with you.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Darling, this is an ordeal for you, I am so with you all the way. I am sure she can feel the love, somehow, we just don't know. I know you love her so very deeply, oh my dear, this is so heartbreaking. I am glad the Deputy Manager is an experienced dementia nurse. She will know and understand the best care and be able to support you. All love and thoughts. Thank you so much for posting. Gx
Thank you my dear friend. I love that you are still with me, as I am with you. Some very sad posts this morning. I am so glad your letter was published last week. We are the Unknown Sufferers. Not wanting sympathy, just acknowledgement and, if possible, some understanding. Take care xx
 

Scouts girl

Registered User
Jan 18, 2017
306
0
Thank you my dear friend. I love that you are still with me, as I am with you. Some very sad posts this morning. I am so glad your letter was published last week. We are the Unknown Sufferers. Not wanting sympathy, just acknowledgement and, if possible, some understanding. Take care xx
Thank you Kindred and as Jezzer says we are the unknown sufferers, just wanting some understanding as to what we are all going through both before and after. Xx
 

kindred

Registered User
Apr 8, 2018
2,937
0
Thank you Kindred and as Jezzer says we are the unknown sufferers, just wanting some understanding as to what we are all going through both before and after. Xx
Yes, this is so very heartfelt and true. I have found the most profound understanding here, on TP, and in my husband's nursing home. We are indeed the unknown sufferers, our whole lives are turned upside down. Thank you so much for posting. Gx
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Oh my dear I do understand, I know how you must miss your mum. I know it doesn't get easier. My OH is now in a good nursing home but all my life is bound up with him still and probably forever. Our health is bound to suffer physically and mentally. All thoughts and fellow feeling with you.
Hi there - I posted you regarding "letters" earlier but it was removed due to T&Cs. Sorry this is brief but must recharge phone and tablet. Speak later. With Love.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Hi there - I posted you regarding "letters" earlier but it was removed due to T&Cs. Sorry this is brief but must recharge phone and tablet. Speak later. With Love.
I read it before it vanished and thank you with all love, too. So good to hear from you.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Good morning! I must read the T&Cs! Had no idea. I replied that it had been posted in good faith, apologised & received a brief but nice response. I hope you have a positive visit today. Sending love to you both.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Dearest @Carmar
What a lovely post - Thank You! I agree entirely with your responses to @Scouts girl and @Lindy50. This wretched, unjustified guilt! In my heart - or is it my head, I'm past being sure anymore! - I know mum is where she needs to be but now other "guilts" have crept in - should I have stayed longer, an I right to just hold her hand and let her sleep or should I be talking more? I do speak to her in my head and hope she can "hear" me. I could easily drive myself crazy with these thoughts. And so, I keep telling myself "you did all you could" and "you're doing all you can now". From other posts, I know I'm not alone in wishing peace for mum yet not wanting to lose her. This is no life for her, just an existence. Sending my love to you all xxx
 

Scouts girl

Registered User
Jan 18, 2017
306
0
Bless you all for your heartfelt words, they mean a lot to me and to others going through this guilt/grief and anticipatory grief too. Thinking of you all and do keep posting it does bring us comfort. Xxx
 

carolynp

Registered User
Mar 4, 2018
569
0
Hi @Jezzer, after your post on this thread today (which showed as a notification for me), I have read back through Kindred's thread to see how you are and how your Mum is doing. What an awful, scary rollercoaster you are on. A rollercoaster that never stops, does it? I so empathize with you Jezzer, it is a heartbreaking 'ride' and we have to adapt and adapt and adapt again as the illness takes it's course. The strain on the emotions can be exhausting and sadly, even if tears come they tend to bring no relief. I'm so sorry you are having such a difficult time. Somewhere inside her, your Mum will be feeling the love you have for her even if she can not respond in the way you would wish. Of this I am completely certain. When my own Mum was in recovery after surgery in hospital a week or so ago, she was still asleep after 2 hours. The nurses came to get me and stood over Mum, saying "wake up N*, time to wake up now" in very loud voices. Mum, curled up on her side, did not respond. They said they would just let her sleep on for the time being. When the nurses left the bed, I sat down at Mum's bedside and very quietly whispered "Mum". Her eyes shot open and she awoke immediately, albeit groggily. If that isn't love, I don't know what is. That is still there in your Mum too and I use this example of my own, only to give you encouragement that no matter what, love is always recognised in the heart even when the brain can no longer make sense of it. Sending you a hug x
Hi @Carmar I just wanted to say what a lovely story. Thank you. I suppose if anything is going to rouse a mother, it’s her child’s voice saying Mum. Very moving and also strangely resssuring.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Dearest @Carmar
What a lovely post - Thank You! I agree entirely with your responses to @Scouts girl and @Lindy50. This wretched, unjustified guilt! In my heart - or is it my head, I'm past being sure anymore! - I know mum is where she needs to be but now other "guilts" have crept in - should I have stayed longer, an I right to just hold her hand and let her sleep or should I be talking more? I do speak to her in my head and hope she can "hear" me. I could easily drive myself crazy with these thoughts. And so, I keep telling myself "you did all you could" and "you're doing all you can now". From other posts, I know I'm not alone in wishing peace for mum yet not wanting to lose her. This is no life for her, just an existence. Sending my love to you all xxx
My darling girl, all our lives we want to be a good daughter to the mums we love. You are doing all you can. No, not alone at all. Gxx
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
My darling girl, all our lives we want to be a good daughter to the mums we love. You are doing all you can. No, not alone at all. Gxx
Thank you so much. Gosh you had an interesting, albeit, rather unsettling visit today. Never pleasant when things turn ugly but sounds like you handled it all brilliantly. Glad your OH was not upset by it all. And what do you get by way of thanks? A pigeon dumping on your head! As @Grannie G said, it is indeed considered lucky but it sure doesn't feel like it at the time! Hey @carolynp , that is no way for our Destroyer of Moths to be treated is it? Watch out Polly Pigeon, you don't know who you're dealing with mate! Well, walked into mum's room to be greeted with "Hello" and that gorgeous smile. We had a nice little chat before mum slipped back into her other little world. Lovely to hear her speak again. I'm told this may come and go. She was tired but she looked well, relaxed, in cheerful mood and no pain. Cannot ask for more than that at this stage. A welcome and lovely surprise. These are precious moments. Love to you all x