I'm shocked at how I feel about my parents' dementia sometimes

Nichola C

Registered User
Apr 28, 2019
11
0
Your post reads like a maelstrom of terrible, distressing events and you are caught in the vortex. It’s like rapid machine gun fire boom, boom ,boom.

Is it any wonder you feel the way you do? You are dealing with things head on. Each incident upsetting and unexpected in its own way and seemingly having no time to recover in between. You are getting no support from your sister and with children they naturally want your time too. As Beate says counselling may help. It benefitted me definitely even though I just ‘talked’. That’s why posting on TP is so helpful because you can be totally honest in anonymity. There is such a release in sayin* how you really feel.
You are under alot of pressure be kind to yourself. X

Thank you for your kind post, it certainly does feel like a barrage sometimes...although now they are both in some sort of care at least my family aren't being woken up in the middle of the night by phone calls or the police when one of them had gone wandering! So perhaps I need to look on the bright side more...it could certainly be worse...onward and upward..!
 

Nichola C

Registered User
Apr 28, 2019
11
0
You could have been writing about most of the 'stuff' I went through; it feels as though you lurch from one crisis to another and are never in control. All I can offer (apart from huge hugs and empathy) is that you have to remember that YOUR family comes first. They will be here when mum and dad are gone.
Forget about third parties offering 'advice' - what do they know about the day to day crises that you deal with? They don't, so the only person getting upset about them is you. Ignore them.
Carer breakdown means that no-one is looking after your parents. Looking at it from a different perspective, you don't have to be the one in charge... If you want to you can absolve yourself from all responsibility (yes, I know, guilt, duty, etc. etc.) but that is an option.
Don't feel disgusted with yourself - none of us on here are one of those wonderful people that cope, deliver chocolates to their loved ones and (the women anyway!) manage to have their nails done and their make up on just so. Most of us had a haircut six months ago, are worn out, worn down and half demented ourselves.

Thank you FullTicket for your kind support.....I particularly liked the comment about the haircut...I've been trying to get one for about 8 weeks now....I'm going to have to incur the wrath of the stylist and do a hatchet job myself soon if I don't get there in the next couple of weeks (ha ha!) I think I could easily absolve myself (in my head at least) from visiting Mum so often (she really doesn't know who I am) but Dad is always so very happy to see me when I get there and slightly concerned that I wasn't there earlier! thank you again......
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
I feel overwhelmed just reading all you are coping with. The house fire and an unsupportive sister on top is just too much. I can only say thank goodness for a loving husband. How would you survive it all without him!

No solutions but a lot of sympathy @Nichola C.
 

huggie

New member
Apr 29, 2019
8
0
I am so angry about my parents' dementia......there I've said it...
I admit to using this forum as a form of catharsis and therapy, but I don't really feel able to talk much about it on a day to day basis. I have a husband and younger children at home, and older children at University, all of whom need different things from me...I work full time in a pretty intense job which demands 12-14 hour days over 6 days a week, and quite frankly I don't want to bore people with my problems...!...
About 2 years ago it became apparent that something was wrong with my parents who had been living independently in their own home about an hour and a half away from me. Their bank manager called me and asked me to come up for a meeting as she was concerned about their finances. This was the start of a pretty rough period of time, during which I have had to arrange for them both to be assessed at the Memory Clinic, fight for Social Services support, arrange for food deliveries, negotiate with Dad about giving up his driving licence and selling his car, deal with Mum's nocturnal wanderings and the inevitable involvement of the Police, help her through a hospital stay (after a broken hip) and her subsequent admission to 'emergency residential care', and ultimately fight social services (tooth and nail) to allow them to relocate to my home town, so that I can be closer to them and help them through this period of their lives. The situation now is that Mum is in a very good BUPA care home near my place of work, and Dad has a 'Supported Extra Care flat' in a private complex about half a mile from her, and is just about managing to cope on a day-to-day basis with his own personal needs, as he is fed well at lunch in the complex. I manage to see him twice a week, and I take him to see Mum at the weekends.
The brief outline I gave above tells nothing of the additional complexities we've all been through. The development in my father of Grand Mal epilepsy (an horrific fit one Sunday afternoon in front of my 9 year old daughter, when we all thought he was dying and had grabbed the defib from the village hall, whilst we waited for the ambulance to arrive) and the fact that his particular form of dementia can lead him to 'misplace' faces and relationships. He accused me of having an affair with my husband 'under his roof' (he clearly thought I was my mother) and kept writing me obscene notes which I would come home to find, after work. He thought on several occasions that my home was his, and accused my husband and I of trying to sell it from under him...this was when his own house sale was going on and he was living with us for supposedly 2 weeks but which turned into 9 months... During this time he was involved in an argument with a 13 year old boy at the local park whilst walking his little dog...the boy was teasing my dad and this didn't go down well...the upshot was that the boy punched my father in his face, causing him to fall to the ground and break his hip. His head hit the road surface so hard he had a number of brain bleeds, and suffered 'life changing injuries'....there is now a criminal case pending, but my father can remember little of it...(perhaps thankfully)
Meanwhile my mother, once installed in her new residential home, has just degenerated. I had hoped that she might rally a little, her previous emergency placement was awful and she was desperately anxious. The new home is bright clean and well staffed with people who genuinely care about the residents and who try so hard to look after them well. My mother however has become mean and suspicious, and over the last 9 months has simply degenerated. She cannot remember anything of her previous life, not me and my sister, and sometimes, not even Dad either. Initially she was allowing the carers to wash her and dress her quite nicely, but now she sits in a disreputable nightdress all day and rarely gets out of bed...she is horrible to the carers, rude and abusive. I know this is the illness, but I am so angry about it all....I want to be one of those amazing people who visit their loved ones, bring joy and happiness, and I really do try....I always take her chocolate (the only thing she seems to love anymore) and flowers, which seem to cheer her. I have made her memory books of photos and cuttings from our earlier lives, and take her anything I think she might like. But in my heart it depresses me so much....it hangs over me each week, that I have to visit, have to collect Dad and take him to see her, and along the way have to remind him that it is his wife we are going to see not his own mother.....
If I am really honest, I feel that my mother has gone...it is just a shell that remains of her...I see her getting less and less of who she was, and I have such a complex mix of feelings...I'm angry about it, and sad that she is changing, and sometimes I even wish it would just end....and the inevitable would happen. That makes me feel so disgusted and ashamed of myself for thinking this about my mum....My father at least still remembers more of himself and his past life. He is still the person that he was an I fight everyday to help him keep that part of himself. It is hard, and I find myself watching for any further decline in his manner and memory. Logistically he has a little money left from the sale of his house, which pays the (very high) monthly service charge on his flat. It will run out at some point, and then I will have a whole other set of horrible decisions to make...what to do, how to fund it, where he is to go etc...My sister visits them both occasionally, never telling me when she is coming, and then e-mails me a whole set of comments and criticisms about what I need to be doing for them. That's always a hard thing to swallow!
I am sorry to have written so much, and I don't expect that anyone can help me other than sympathetic support, but I didn't feel able to say some of the things I have said here, anywhere else.





Omg. You have so much going on right now. Don't be too hard on yourself. You are doing amazingly and many people would not still be standing. I know things are very stressful for you but you must take care of yourself first. If you carry on being run ragged then you will be no good to anyone. Your family is the most important thing. Work is not. As people say, companies will cover your job but no one can replace you. Something will have to give or you will make yourself really poorly. Stress is not good for you. Take any help that's available, although it sounds like you have had to fight to get any. Give your sister a list of things she needs to do. Don't ask her, just give them to her. Shes less likely to complain then! I find it always gets left to one person and you get no thanks for doing what you do. Visiting less sounds like a good plan and would give you a break. Also talking to someone would be very good. Don't feel guilty as you are doing as much as you can. Your mum or dad would never want to see you being stressed out. I also understand about almost wishing that it would all be over. I feel the same, my dad is living with us and I don't think he will be with us for too long. He had gone down hill so much lately that I wish his pain would end but I also don't want him to go. The angels will be calling him before too much longer. I am an only child so it all comes down to me and my husband. Please share the load with other family members. You are important too. Love yourself and im sending you hugs of strength. Sometimes it helps just writing it down and getting some advice from others going through the same. Ive only just discovered this forum so im a newbie! Take care
 

patbryn

Registered User
Mar 22, 2019
80
0
Wales
I cant help but i will tell you that you are a fantastic daughter. Never be afraid to write on here what ever you want, I cant imagine any one of us judging you wrongly, no one has the right to judge another unless its for praise.
your a star.
 

Elle3

Registered User
Jun 30, 2016
705
0
You brought me to tears too when reading all that you have been going through. We think we have it tough, but then realise there is always someone who has it worse. You sound like a wonderful, caring and extremely organised daughter and you should be so proud of yourself, your parents would be if they could understand.

I know it’s hard, but be kind to yourself and try to step back a little. Big hugs. X
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,994
0
72
Dundee
I'm so glad you've decided to share your situation here. No wonder you feel angry. You'll have seen by now that you're amongst people who really understand and I think getting things off your chest does help - even just a little.

I wondered if there would be any day time activities your dad might attend. You can find out what's available near you by putting the postcode in the box in this link. If that's not helpful or appropriate please ignore!

https://www.alzheimers.org.uk/find-support-near-you#!/search

Wishing you and your family continued strength.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Dear @Nichola C
Your post was so heart felt, and touching as well. What a tough time for you. It must seem never ending.
As @Fullticket says, third party advice can be ignored but maybe third party thoughts would give a different perspective?
You come over as a high achiever, a highly organised person, able to cope with most of the things that come with a busy, stretched life. BUT dementia takes no prisoners and, as a number of TP members have said, it will take and take. It will wear you down. Only you can decide how much you can continue to cope with.
Forget the "amazing person" idea as dementia can totally scupper all our best efforts. If we didn't love our PWDs maybe we could just stop visiting, but love keeps us going back for more. And duty, too, and our own perception about what our loved ones need.
So, ignore this if it is inappropriate, these are just thoughts.
Does your father enjoy/benefit from seeing your mother? Do you? This is precious time and, no matter how much you love your mother, you deserve quality time and (dare I say it?) even fun time with your husband and children. I'm afraid I became consumed with my mother's dementia and it nearly broke me, so I speak only with compassion. Would fewer visits to your mother be detrimental to her or your father?
You obviously need to help your Dad but are Social Services prepared to step up to the plate? It sounds as if he will need full time care before long and that this will need funding by SS so the responsibility will be theirs. Without funding, you cannot do this on your own.

It's so difficult, isn't it? Love complicates everything but I found the lack of support was the real killer. You just get landed with everything, with no experience and no training. TP was my lifeline and I hope it helps you.
This last paragraph says it all - landed with everything, no experience, no training - you lose your own self to take on this role that you never chose as a career path, probably because it was not something you wanted ever to do - and not only do you end up doing it, but with/for people you love dearly - it is totally and completely as horrid as it can get - I share those feelings 150%
 

elvismad

Registered User
Jan 8, 2012
289
0
@Nichola C
But in my heart it depresses me so much....it hangs over me each week, that I have to visit, .....
If I am really honest, I feel that my mother has gone...it is just a shell that remains of her...I see her getting less and less of who she was, and I have such a complex mix of feelings...

You have put into words exactly how I feel. I too am shocked that I feel the anxiety building as the weekend and my weekly visit nears. I feel an obligation for who Mum was to ensure her safety and comfort and, I suppose, I hope that in some part, she knows me and takes comfort from my visit.
I don't like the way I feel but I can't help it.
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
Thank you Witzend for taking the time to post back to me...sadly I think that Mum would have rather died than ever have been placed in a home...its one of the things I feel most guilty about...but she kept running away from home and the police were getting concerned...she had to go into emergency care or be sectioned....there wasn't really a choice.

I know exactly how you feel. My mother was already 89 by the time her dementia was so bad that a care home had become an urgent necessity. If I'm honest, I wished and prayed that she could slip away peacefully in her sleep before we had to,put her through the huge upheaval of the move.
But because her general physical health was so robust, she went on for very nearly 8 more years. During that time I saw so many other residents arrive, decline, and quietly disappear. I'm sure the care home staff had begun to think she'd go on for ever - I know I had.
 

Staff online

Forum statistics

Threads
138,118
Messages
1,993,122
Members
89,780
Latest member
Lindsay A