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

[Jezzer]

Good morning
I've not posted for such a long time so feel guilty about my query and also that I'm being very selfish. Mum has been in a really good care home for almost 2 years now. She was admitted for a variety of health issues but was only diagnosed with mixed dementia 6 months after admission. I cannot fault her care and she still seems in a happy little world although she does say and believe the strangest things - my brother and I knew to expect this. I am so grateful for her care but I still struggle myself with all that's happened. I've pretty much cut myself off from people and feel so lonely, anxious and depressed. I dread what is ahead. I know so many of you are in a far worse position than I and I'm so sorry if my post seems selfish. I now live with my brother who is lovely but don't want to burden him further as I know he too is worried. I'm 61 but feel like a silly child revealing all this. Does anyone else out there feel like this? Thank you so much for your time.

 

[marionq]

@Jezzer and @Carmar. Please please start making a life for yourself. I worry about all the people who become lost as carers and then can’t find their way back into an enjoyable life for themselves. None of us signed up for this and as long as our loved ones are being cared for we need to make use of the new chance we have. Last year I got some respite and went by myself to Amsterdam for a short trip. I’ve been living since then on the recharge it gave me going round galleries - Van Gogh and Rijksmuseum my favourites - and we each should look for that thing which gets us back into some happiness.

Best wishes.

 

[Jessie107]

Hello,
My Mum went into a care home seven weeks ago and I am struggling with it
I don't think I will ever get used to her being in care.
I understand how you are feeling, what makes the situation worse for me is that I am housebound with M. E I got ill the same time as she got Alzheimer's
So I have way too much time to think, which is not a good thing

I am only able to see my mum once a week when my husband takes me ,and I always find it traumatic.
I too dread what is to come, I am trying not to think about it.
I hope you can find something to focus on that will help you, and take comfort that you're Mother is in her own world and seems happy
Regards
Jessie

 

[karaokePete]

Hello @Jezzer, and @Carmar, above and beyond all the great advice that has already been given do you think it may be worth while talking to your GP about the possibility of a few Counselling sessions. I know that a few members of TP have done this and got good results. Something like that may help to get you on the right track to follow up the other advice you've been given.

I'll apologize in advance if you have already been down this route or been given this advice elsewhere.

 

[Jezzer]

@Carmar @karaokePete @Jessie107 @marionq

Morning!
I have been trying since Thursday to reply to your wonderful responses but without success. I'm now trying this and would be so grateful if at some point you would let me know if you receive the message. If so I will reply in full. Many Thanks

 

[karaokePete]

@Carmar @karaokePete @Jessie107 @marionq

Morning!
I have been trying since Thursday to reply to your wonderful responses but without success. I'm now trying this and would be so grateful if at some point you would let me know if you receive the message. If so I will reply in full. Many Thanks

Hello @Jezzer, yes, message received. Two ways to reply are as you did by using @ AB1, or by clicking the box in the bottom right of a message that reads 'Reply to message'. Either way the person will get an alert.

 

[Jezzer]

Oh Yay!!!!! Thought I was going mad! Thank you so much for replying @Carmar and @karaokePete ! Just going to visit mum and will get back to you later. Bless you both.

 

[Jezzer]

At last I can finally reply properly to the wonderful responses to my original post! I'm not sure what went wrong but am very relieved it seems to have come good
Thank you so very much for taking the time to read and reply to my post. @Carmar, EVERYTHING you say makes perfect sense. I hadn't realised just how much I had become distanced from friends and other people in general. I feel like an alien and hardly recognise myself from the person I was a few years ago. Several years ago when mum's sister developed vascular dementia (& her own estranged daughter refused to do anything to help) I .
became involved and, in a nutshell, had to sort out her admission to a home, sell her property etc - my brother really was a huge help but he works full time and since I was available - having taken early retirement because of health issues - found myself sorting things out.. It was hard work but I wasn't invested emotionally really. My aunt was quite a cold person and I did it for mum really. Then, almost two years after losing her sister, I couldn't believe it when mum became ill. This time I was totally affected emotionally - her diagnosis floored me. Not just my beloved mum but my rock and best pal slowly changing week by week. My brother and I love her so, so much and will always do so. He and I had a long chat last night and it was so worthwhile for us both. Thank you for suggesting this.
@marionq - I so admire you taking what sounds like a rejuvenating break and I'm so glad you enjoyed it. I really am trying to make a life for myself but it's going to be small steps. My anxiety and difficulty in disengaging myself from worrying all the time about mum are getting in the way. My head knows she is where she needs to be but my heart is another matter. The guilt remains.
@Jessie107 - I'm so sorry you developed M.S. You really don't need this and at such a bad. time. Please don't feel bad about visiting once a week;
You can't help that. Some fellow residents in mum's home whom I'm told have family close by never receive any visitors and I find that so very sad. I understand you finding visits traumatic. All I can offer you is advice I received which is take it a day at a time - easier said than done. I too have too much time to think which is lethal for me. @karaokePete - As you suspected, I have indeed been down the counselling road. Sadly it didn't help. A nice lady but when I tell you her final words were "I'm sorry about your mum but get out there and embrace life" you'll understand I found that a bit dismissive. I found it a bit like being told "pull yourself together". I know I'm oversensitive so I'm not blaming her but I don't really think she was the right person for me. I honestly think I'll get more help here because you all really understand.

So, once again, many thanks to each of you. You are all having a tough time but still took time out for me and that means such a lot. If I can offer any help to others, I would be so pleased to do so, even if it's just lending an ear.
Sending my very best wishes to you all and everyone trying to deal with this disease.
God Bless
Jez[/QUOTE]

 

[Jezzer]

Oh bless you @Jezzer, I am so happy that you have worked out how to reply and can now participate fully in the TP community.

Thanks @Carmar Let me know how you are getting on sometime?

 

[karaokePete]

Hello again @Jezzer, I have read what you said about the Counsellor and am interested in taking that one step further. With dementia people often suffer from anticipatory grief as they 'anticipate' the end of a life. In terms of bereavement there are two schools of thought that relate to those left behind.
One school is from a psychological theory that states we should grieve for a period and then get over it and move on. This sounds a bit like what you were told by the Counsellor.
The other school is a social theory that states that what are know as 'continuing bonds' with the deceased for the rest of our lives can be healthy if used correctly. An example of this in modern society can be found in ancestor worship found in Japan. The idea is that that we should indeed move on with our lives but not lose contact with the lost relative, rather incorporate contact into our new life where they still play a role, albeit a different role. Could you bear this theory in mind and maybe build a new relationship with your Mum by visiting and maybe talking about past family life with her. It may do you both the world of good.
Just a thought - I hope you can see some value in it.

 

[Jezzer]

Th

Hello again @Jezzer, I have read what you said about the Counsellor and am interested in taking that one step further. With dementia people often suffer from anticipatory grief as they 'anticipate' the end of a life. In terms of bereavement there are two schools of thought that relate to those left behind.
One school is from a psychological theory that states we should grieve for a period and then get over it and move on. This sounds a bit like what you were told by the Counsellor.
The other school is a social theory that states that what are know as 'continuing bonds' with the deceased for the rest of our lives can be healthy if used correctly. An example of this in modern society can be found in ancestor worship found in Japan. The idea is that that we should indeed move on with our lives but not lose contact with the lost relative, rather incorporate contact into our new life where they still play a role, albeit a different role. Could you bear this theory in mind and maybe build a new relationship with your Mum by visiting and maybe talking about past family life with her. It may do you both the world of good.
Just a thought - I hope you can see some value in it.

Thanks Pete - I really appreciate what you say. Actually mum and I talk about the past whenever I visit and it's really good and I leave feeling our time together has been beneficial for us both. My cousins and I picked out photos last year and for her 90th birthday they had them made into a lovely memory book so we often look at that together. She's still and always will be my lovely mum; it's just that our relationship is a bit different but that's OK.

 

[Jezzer]

Th

Thanks Pete - I really appreciate what you say. Actually mum and I talk about the past whenever I visit and it's really good and I leave feeling our time together has been beneficial for us both. My cousins and I picked out photos last year and for her 90th birthday they had them made into a lovely memory book so we often look at that together. She's still and always will be my lovely mum; it's just that our relationship is a bit different but that's OK.

@karaokePete Sorry I forgot to say Im sure the counsellor used the first theory you mentioned and it wasn't right for me.

 

[Amy in the US]

It is too late, and I am too tired, to reply properly, but I wanted to say that your statement about feeling "like an alien" really resonates with me. I, too, have felt this way-as if I don't belong on this planet with all these normal people who have no idea what I'm experiencing or how distressed I am, even when I tell them very explicitly!!

I want to tell you that with time and a lot of effort, his has gotten better, so there is hope.

I am not sure that counselor was the right fit for you. Might you be willing to consider trying another? I have gotten a lot of help from mine. Also, TP has been fabulous, as have my local support groups and workshops and lectures put on by my local Alzheimer's Society chapter. So there might be an idea there for you, perhaps, at some point.

I hope you feel welcome here on TP and please do post whenever, and whatever, you need. Best wishes

 

[Jezzer]

It is too late, and I am too tired, to reply properly, but I wanted to say that your statement about feeling "like an alien" really resonates with me. I, too, have felt this way-as if I don't belong on this planet with all these normal people who have no idea what I'm experiencing or how distressed I am, even when I tell them very explicitly!!

I want to tell you that with time and a lot of effort, his has gotten better, so there is hope.

I am not sure that counselor was the right fit for you. Might you be willing to consider trying another? I have gotten a lot of help from mine. Also, TP has been fabulous, as have my local support groups and workshops and lectures put on by my local Alzheimer's Society chapter. So there might be an idea there for you, perhaps, at some point.

I hope you feel welcome here on TP and please do post whenever, and whatever, you need. Best wishes

Good Morning @Amy in the US Thank you so much for your kind and helpful post. I agree that the counsellor was not right for me and I'll certainly consider trying another. I do think what I'm experiencing is a mix of anticipatory grief, distress at seeing mum deteriorate and feeling other folk don't understand. Thank heaven's for TP and wonderful folk like you. It helps knowing you can identify with the "alien" feeling although I'm sorry you've felt this way too. People really do think that now your parent is in a home that you are free and clear of worry etc. They just don't get it but then they are not where we are so why should they? You say it has gotten better but two years in I feel its getting worse. I know in my heart I've got to work on this and access the help that's out there. Far easier to hide away! Thank you again for your kindness and understanding.

 

[Jezzer]

@Jezzer is having difficulty responding to posts even after reading the instruction videos. Can an administrator help at all please? Not sure how I contact anyone directly to request this for her, as I can't see that an administrator is online at the moment, but she is aware I am posting this as we have been personal messaging. Thank you to anyone who responds!!

@Carmar I'm sure I've not thanked you for going over and above to try and help with my earlier posting problems. So I'm sorry this is late but a huge THANK YOU for taking the time and trouble to help me. Bless you

 

[Jezzer]

@Amy in the US
Hi Amy
I was just thinking about you so thought I'd get in touch and ask how things are with you? Was so frustrated with an old friend of mum's who I bumped into today. She asked how mum was and said it must be "a weight off my shoulders" with mum being in care! I said that doesn't mean the distress and worry goes away but I could tell she thought I was being over-dramatic. I don't want or need sympathy; I just wish people wouldn't assume everything is OK now mum is in a home. Thank goodness for TP where folk DO get it. Please let me know how you are when you can. Best Wishes.

 

[Jezzer]

Hello all
I haven't stopped accessing TP but following a reply I posted on the Thread "Please don't throw me away" some time back, I've continued to post about mum on there. I feel it appropriate to move back to this, my original Thread although the lovely people on the other Thread have welcomed me so warmly and been wonderful. I shall still follow that Thread as I consider the folk who have responded to me as friends, just as folk here are. I will post an update on mum later. Thanks folks!

 

[kindred]

Hello all
I haven't stopped accessing TP but following a reply I posted on the Thread "Please don't throw me away" some time back, I've continued to post about mum on there. I feel it appropriate to move back to this, my original Thread although the lovely people on the other Thread have welcomed me so warmly and been wonderful. I shall still follow that Thread as I consider the folk who have responded to me as friends, just as folk here are. I will post an update on mum later. Thanks folks!

Thank you darling, still with you, here. Looking forward to update on mum. Gx

 

[Lindy50]

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

 

[Jezzer]

Thank you darling, still with you, here. Looking forward to update on mum. Gx

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