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sundowning and mum at wits end - me drowning in guilt.

JASA

Registered User
Apr 8, 2015
2
Validation therapy

Hi
I posted recently about obessional worries and have leant a lot about sundowning very quickly.....

Mum having an awful time with Dad in afternoon/evening and the trigger is always - are my mum and dad alive/dead? I have suggested to Mum afer consulting this forum that she stalls and says they are and they will maybe see them when the weather is better but she says she can't tell him a direct lie and what if he remembers and knows she has been lieing to him? Yesterday was horrible. The dementia nurse came on Friday and is going to see about changing his medication but I don't know how we will get through the next few days.

I live 50 minutes drive away and was working full time but was signed off due to stress etc on Thursday. I went over to see them Friday and Saturday - I usually stay about 3-4 hours or so. I am drowning in guilt because I feel I should stay there with then overnight (I am single, no children) but I cannot bear it. But increasingly I cannot bear my thoughts back in my own home, hardly any sleep last night. I am breaking up and how can I help my mum if I do that? And what do I have to bear compared to what she is bearing? I feel that I am such a coward.

I was on this forum for hours last night and it helped so much to feel a part of all your struggles. I just had to talk to someone this morning.

Lesley x
Lesley this is a very difficult time for you and your Mum. Has your Mum sought advice from the Alzheimer's association about how to deal with this question? She does not have to lie but should avoid contradicting anything that your Dad says. If there is a belief that his Mum and Dad are alive (which is very common) distract him with positive conversation about his parents, what kind of car did they drive, what was the house like that they lived in? Your Dad is thinking about his parents so get him to talk about them. Have a look on line for tips on how to manage BPSD (Behavioural and Psychological Symptoms of Dementia (such as sundowning) Amazing results can be had through simple strategies. You and your Mum know your Dad best and will have all the information to problems solve his sundowning behaviour. It's a cruel illness I've been where you are and my heart hurts for you. x
 

janey106

Registered User
Dec 10, 2013
139
Hi everyone.
You all seem so loving, caring and kind with great love for those you are caring for. I don't feel any of these things for my mom who has had Alzheimer's for about 5 years but diagnosed about two and a half years ago. I work full time and stay at my mom's in the evening during the week and take her home to be with me and my family for the weekend. I go through the motions of caring for her, bathing preparing meals, helping her dress etc. I don't really know what stage she is at. What I do know is that some of her less desirable (to me anyway) traits that she has always had are very much emphasised now and I can't help resenting her when she acts this way now. The traits are probably not even that bad to most of you but I feel I have been controlled by her fo all of my life, I am 58 now, have a husband, three children and grand children. Mom has always kept me tied to her apron strings emotionally I didn't even go on honeymoon because she made me feel bad about leaving her on her own. There is so much more that I guess is irrelevant the main point is I don't feel the way you all se
em to. What I do feel is that I am a very unkind, wicked and bad person when it comes to her and that perhaps she would be much better off without me.
Hi Rosiegirl

I truly empathise with how you feel right now and I am certain we still have a very long way to go with our Mum. Mine was a good loving Mum in so so many ways but pretty much everything came with a 'price tag' and like you, I have felt limited in my own life plans by her needs. My Dad however has been so unconditional in his love and parenting that I want to help him and that means being there for her. I have passed through a stage of thinking I am bad for disliking her and her self-centred demands, recognising that respect and caring and love should still be appreciated and earned and I don't believe they are a 'given' even with parents. It guides me in my own parenting very successfully.
I can't help but wonder how she manages during the day when you are at work or do you have carers around. Have you any access to care resources, support elsewhere? Would she know it was the weekend or could you at least get some regular breaks from caring and have time for yourself? Please don't feel wicked or bad ....... Reflect on how much you do to support and help .... Those aren't the actions of a wicked bad person, quite the reverse. Please don't beat yourself up ..... You sound exhausted and understandably angry that this awful disease is claiming more than one life.
Daft idea but on big piece of paper, draw a jelly baby - that's you. Now surround her with bubbles of all the wonderful and good things that make you who you are ....get family to contribute. Then put 'you' somewhere visible and remember YOU are not defined by this disease or your Mother. Stay strong. Thinking of you
 

Quilty

Registered User
Aug 28, 2014
1,051
GLASGOW
You are anything but wicked

Hi everyone.
You all seem so loving, caring and kind with great love for those you are caring for. I don't feel any of these things for my mom who has had Alzheimer's for about 5 years but diagnosed about two and a half years ago. I work full time and stay at my mom's in the evening during the week and take her home to be with me and my family for the weekend. I go through the motions of caring for her, bathing preparing meals, helping her dress etc. I don't really know what stage she is at. What I do know is that some of her less desirable (to me anyway) traits that she has always had are very much emphasised now and I can't help resenting her when she acts this way now. The traits are probably not even that bad to most of you but I feel I have been controlled by her fo all of my life, I am 58 now, have a husband, three children and grand children. Mom has always kept me tied to her apron strings emotionally I didn't even go on honeymoon because she made me feel bad about leaving her on her own. There is so much more that I guess is irrelevant the main point is I don't feel the way you all seem to. What I do feel is that I am a very unkind, wicked and bad person when it comes to her and that perhaps she would be much better off without me.
Your mum seems to have taken over your entire life Rosiegirl. Its hard to care for someone you really love but even harder when there is a history. My mum has had mental health issues her whole life and seems very much like your mother. Please google "bordeline personality disorder". I was amazed when I finally figured it out. It was not me - it was her and her illness. We all admire you and are there for you. Get some respite and look at 24hr care. You deserve a life too and your family deserve to have you.
 

jax2015

Registered User
Feb 8, 2015
5
how do i cope

I go to the home every day if i can to see mom,she seems to think all the others there are children,she calls them her grandchildren and gets in there space,there never seems to be any staff around and conflict with the residents often take place.mom is always saying she needs to get out of there,i feel like i lose my patients with her as she is the all organelle busy body fussing and involving herself with others,she walks round like she is the boss,the staff find her entertaining,she is always upset when i am there but if i observe from a distance she is fine,one day she seems real demented and others not so bad,her emotions are all over the place,as are mine.
i dont know how i am supposed to feel,i keep looking on line at the stages hoping she is almost at the end as she would not want to live the way she is and tells me so.my farther past away in November, how to deal with his loss,and feel like i am doing the best for mom,feels like i am in another world in another place, and very confused.
 
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SMR

Registered User
Apr 10, 2015
1
Might help

My nan suffers with Alzheimer's and often asks, sometimes cries, about her Mother. She passed away when my nan was younger, before I was born. I don't like lying to her so I tell her the truth that she has passed away and say that she is watching down on her, the reassurance helps. When she is very upset I suggest that we visit her Mother's grave and take some flowers, this really helps and I have actually framed a photo of my nan and her parents grave. Every time she gets upset, we look at the photo and she is okay afterwards.
 

Carer Bear

Registered User
Apr 11, 2015
3
You need a break to let your compassion renew

Hi everyone.
You all seem so loving, caring and kind with great love for those you are caring for. I don't feel any of these things for my mom who has had Alzheimer's for about 5 years but diagnosed about two and a half years ago. I work full time and stay at my mom's in the evening during the week and take her home to be with me and my family for the weekend. I go through the motions of caring for her, bathing preparing meals, helping her dress etc. I don't really know what stage she is at. What I do know is that some of her less desirable (to me anyway) traits that she has always had are very much emphasised now and I can't help resenting her when she acts this way now. The traits are probably not even that bad to most of you but I feel I have been controlled by her fo all of my life, I am 58 now, have a husband, three children and grand children. Mom has always kept me tied to her apron strings emotionally I didn't even go on honeymoon because she made me feel bad about leaving her on her own. There is so much more that I guess is irrelevant the main point is I don't feel the way you all seem to. What I do feel is that I am a very unkind, wicked and bad person when it comes to her and that perhaps she would be much better off without me.
You don't seem to have any time for fun. I know that sounds silly but unless you take a break and have some happiness in your life, you can't radiate it to your family (or find compassion for your mum). You must get a break, if you are self funding get a live in agency to provide a weeks cover or even a regular weekend a month. You need time for your own family and they need you. If you are not self funding talk to adult social care about a carers assessment because you have needs too. When the care of your mother no longer takes up all your free time you will find you have more to give. Good luck