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am I strong enough - selfish thoughts

Robbie Rainbow

Registered User
Oct 23, 2021
10
0
Please don't feel that you are in the minority, and that most people are coping well with this. They are absolutely not - despite all the happy, smiley, leaflets that would have you believe otherwise.
I care for my Mum, so a different relationship, but I cannot put into words how utterly relentless, depressing and miserable it is. You are powerless to control it and have no idea when it will end.
All I can say is try and get some respite - be that a sitter, or a daycentre or club that your husband can attend unaccompanied.
I sincerely doubt that you will offend anyone here. We all understand those very dark thoughts, that would send the non-dementia world into apoplexy - because they really have no idea what this is like.

I would also recommend "The Selfish Pig's Guide to Caring", which will hoefully make you smile, and realise that you are not alone.
My thoughts exactly.
 

Robbie Rainbow

Registered User
Oct 23, 2021
10
0
Welcome to the Group Robbie Rainbow 🌈, hope you find it helpful. My OH has PCA too, he has been on Donepezil for about4 years now, and for home it did slowly make a difference, his speech improved and also his confidence levels. I think what helped most though was he isn’t so depressed, we went on some holidays and visited friends and family and he gradually realised life was still worth living. He responds really well to music and we went to a few concerts/shows at our local theatre, it gave him a real lift. 4 years on his memory, confusion and anxiety are worse but in many ways he is better, people who don’t know often just think he’s a bit eccentric. But - I have had to change loads!! Good luck, if things don’t improve maybe some antidepressants might help, but I would try to get her involved in some things she used to really enjoy- maybe you could rope in some friends or family to help. Though I find my OH copes better with people in ones or twos.
Thank you for sharing your experience and offering positive ideas. I’m trying to concentrate on what is left rather than what’s lost. Very difficult though.
 

Dutchman

Registered User
May 26, 2017
1,824
0
74
Devon, Totnes
Bridget had VD and has lived in a home for the last 2 years.

If I could sum up the disintegration of our relationship during the last few months at home together.
No washing
No changing clothes …. Even underwear
incontinence
Not recognising me .. looking around streets
No conversation
Verbally aggressive ( sometimes physically)
Getting up early hours .. no time appreciating
Wanting to escape the house
The list goes on

I’m saying this to reinforce the fact that dementia will tip you over the edge and you become unrecognised to yourself. You thought yourself as having patience, calmness, being reasonable. All that goes after little sleep, fighting to get her clean, no more affection, her empathy goes, she became very self centred. The evilness of dementia destroys everything

So no one can blame themselves for being selfish. Its a matter of self preservation in the face of an illness that will turn our lives upside down.
 

Knitandpurl

Registered User
Aug 9, 2021
214
0
Lincolnshire
I am so lucky that for now, except on bad days my OH is still affectionate, though he can also be very nasty in a way he never would have been before. I know it will change at some point, and we have gone through some really difficult weeks and months at various points, but am trying to live day by day- not really much else we can do. I hope Bridget being in the Home has made things between you a bit better for you .
 

Piper12

Registered User
Nov 20, 2021
25
0
Dear Piper 12. I feel deeply for you.
I sincerely believe that you will come to a decision when you have given yourself space and time to think everything through and work through your feelings, which is what I had to do and it is so difficult. Talk to your family, friends and the professionals around you. I found that everyone was saying the same thing but I wasn’t ready to listen at first. Then I realised, at 3am when I was clearing faeces off the bedroom carpet and my husband wouldn’t let me clean him, that it wasn’t ever going to get better. I hope you can find the strength to let others take over so that you can enjoy him instead of being destroyed by this disease.
Chrissy3
thank you for your kind words it so good to hear from people who understand what you are going through, it’s one of those situations that you only know how hard it is when you experience it. All my family and friends keep telling me it’s for the best and in my heart of hearts I know they are right, but then you get the odd flash of the man you married. My GP told me that they can advise me but only I can decide when it’s time and she will then give me all the help that she can. I must say she has been great but then her grandad has Alzheimer’s so she has a real understanding of what it does to a family.
Take care of yourself
 

inquisitor1

New member
Jan 24, 2021
8
0
thanks Robbie rainbow
but there is a moral to most storie don't argue the semantics
example: your are hungry would you dine in a 5 star hotel or a greasy spoon
the point is objective not to kill as many birds in one stone just get the one that matters the most
 

inquisitor1

New member
Jan 24, 2021
8
0
Bridget had VD and has lived in a home for the last 2 years.

If I could sum up the disintegration of our relationship during the last few months at home together.
No washing
No changing clothes …. Even underwear
incontinence
Not recognising me .. looking around streets
No conversation
Verbally aggressive ( sometimes physically)
Getting up early hours .. no time appreciating
Wanting to escape the house
The list goes on

I’m saying this to reinforce the fact that dementia will tip you over the edge and you become unrecognised to yourself. You thought yourself as having patience, calmness, being reasonable. All that goes after little sleep, fighting to get her clean, no more affection, her empathy goes, she became very self centred. The evilness of dementia destroys everything

So no one can blame themselves for being selfish. Its a matter of self preservation in the face of an illness that will turn our lives upside down.
i wonder you last assumption is not correct or objective bordering on paranoia i use to feel that the world was looking at my fault when i stammered that never helped any one and will not help you

as you must understand any one with any kind of mental block would have one or all of the symptom you listed the question you should be asking your self what's is the work around especially if your partner cant find who they really are you cant tell them how to be kinetic energy you could only show them the path

also i don't mean this in a bad way but because you get the hump over what's is lost you add to the problem for not being with your partner and he or she cant voice there feeling so try to use the mental block to simplify this
example take the routine away to understand if it is need

this may offer you a different view
 

Bettysue

Registered User
Mar 21, 2020
141
0
Dear Piper 12. I feel deeply for you.
I sincerely believe that you will come to a decision when you have given yourself space and time to think everything through and work through your feelings, which is what I had to do and it is so difficult. Talk to your family, friends and the professionals around you. I found that everyone was saying the same thing but I wasn’t ready to listen at first. Then I realised, at 3am when I was clearing faeces off the bedroom carpet and my husband wouldn’t let me clean him, that it wasn’t ever going to get better. I hope you can find the strength to let others take over so that you can enjoy him instead of being destroyed by this disease.
Hi Chrissy3 and Piper 12
I find so much of my own situation in what you have described. I have now made the decision for my partner to go into care and I am waiting for a vacancy in a local care home. It has taken months of agonising to get to that point but now that the decision is made there is a certain sense of relief. As you said Chrissy 3 there were a few lightbulb moments -the double incontinence and refusal to be cleaned up,the broken nights, the wandering off and being brought back by the police. I can only hope that when the move is made we gain regain a better relationship rather than the constant confrontation I live with at the moment.
 

Brickie

Registered User
Oct 12, 2020
23
0
these posts absolutely reflect my own situation. My husband is 79 and iagnosed two years ago, and I am 69, fit and pretty healthy. He too has become inward looking and disinterested in anything I suggest to relieve the sheer boredom of his life. I have a few social outlets, but he always grumbles when I return saying he thought I’d gone. Tv and smoking seem to be his only interests. I get no appreciation of all I do, just constant criticism. It’s unrelenting and, as many others say, not knowing how long it will go on is dreadful. Covid has just exacerbated everything too. I truly believe he will outlive me as I will be driven into the ground.
 

Chrissy3

New member
Apr 1, 2020
9
0
UK
Bettysue. I’m so glad that you have been able to come to a decision. I hope for myself and for you, that we can begin to have some semblance of a positive relationship with our loved one and that, what are going to be our final memories, will not be of the harrowing times, but of moments that can be enjoyable instead of destructive.
 

Prajna

New member
Aug 11, 2021
3
0
I know what you mean. My husband has Alzheimer’s and although he is physically fit and able to look after himself , I findthe lack of memory for doing the simplest thing, the confusion, the constant repetition of the same storie and questions are driving me crazy. It’s getting harder and harder to remain patient, I’ve lost my appetite and lack energy. When do we give up?
 

Piper12

Registered User
Nov 20, 2021
25
0
Well the decision has been made he’s going for 2 weeks respite sometime after Christmas. After a 3/4 hour rant kicking things and punching walls and doors I decided that’s it . So now the search is on, and that’s not easy it’s been a case of oh you will be self funded here’s a list and basically get on with it. his mental health nurse has managed to get him a possible place in January sometime but it’s not near where we live. But if that’s all we can get I’m taking it.
 

Dutchman

Registered User
May 26, 2017
1,824
0
74
Devon, Totnes
Well the decision has been made he’s going for 2 weeks respite sometime after Christmas. After a 3/4 hour rant kicking things and punching walls and doors I decided that’s it . So now the search is on, and that’s not easy it’s been a case of oh you will be self funded here’s a list and basically get on with it. his mental health nurse has managed to get him a possible place in January sometime but it’s not near where we live. But if that’s all we can get I’m taking it.
Hi @Piper12 . My experience was similar in that at the end, when my wife was climbing the walls trying to escape, banging windows, hitting me and altogether uncontrollable, I was given a list of homes to try by Social Services., Fortunately the only one which had a room is just 20 mins away and lovely. She went that very afternoon.
I’m so sorry you need to wait till the new Year and nothing for you is definite. My only advice in the interim is to keep on at all the agencies ( Social Services, Mental health services, your doctor) because unless they appreciate your extreme circumstances they will just “let you get on with it”. Be a nuisance, be firm, make them appreciate your metal state. Otherwise you’ll end up in hospital with a breakdown and that useless to him.
 

Dutchman

Registered User
May 26, 2017
1,824
0
74
Devon, Totnes
Hello there. I am sorry to say this but I am afraid that things never get better with Dementia, they just get worse. My wife is in a care home now as I could not cope with the all night rampages , refusing medication, refusing to shower and change her clothes. When I took her out she would accost strangers to tell them what an awful person I was. Her language was not something I could repeat on a public forum. Sorry to be so negative, but that's how it is. Take Care.
Hi @john1939. Good to have another bloke here on the Forum. Like you I’ve experienced all the dementia behaviour but now my poor Bridget is calm and content in her home. There she is cared for, clean, very little medication and the staff are aware and can do something straight away should she need anything medical. This is all more than I could do with her at home, just the two of us.

I was floundering and completely not coping. I see that now. It’s taking me over two years to admit that. I miss her desperately but she’s with people who can look after her properly
 

Piper12

Registered User
Nov 20, 2021
25
0
Thank you all for your advice and support it helps when it’s from someone who has gone through the same sort of thing and come out the other side. I keep getting advice from people who have never been in this situation but they have absolutely no idea. I did suggest to my son yesterday that if it does get to much I may just pack myself a bag one for him and ring social services and tell them I’m done and to come and pick him up. But I don’t suppose I will as we always put them first.
 

Dutchman

Registered User
May 26, 2017
1,824
0
74
Devon, Totnes
Thank you all for your advice and support it helps when it’s from someone who has gone through the same sort of thing and come out the other side. I keep getting advice from people who have never been in this situation but they have absolutely no idea. I did suggest to my son yesterday that if it does get to much I may just pack myself a bag one for him and ring social services and tell them I’m done and to come and pick him up. But I don’t suppose I will as we always put them first.
I thought of doing that. Just saying to them that I’ve had enough. Bridget would’ve been taken to a hospital and I would’ve been devastated and things probably would have turned out very differently. But when your back’s to the wall and you’re drained out you can’t see any escape from it all.
Keep posting here or on my thread “dementia journey “ for my limited support.

In the end the one we love, no matter what they are like, is our priority. God bless❤️
 

JaxG

Registered User
May 15, 2021
211
0
I know what you mean. My husband has Alzheimer’s and although he is physically fit and able to look after himself , I findthe lack of memory for doing the simplest thing, the confusion, the constant repetition of the same storie and questions are driving me crazy. It’s getting harder and harder to remain patient, I’ve lost my appetite and lack energy. When do we give up?
Hi Prajna, I have a similar situation. My husband can look after himself during the day as long as I leave lists and make sure he has enough food. All he does is eat and read while I am run ragged. He is difficult when I come back, snipes and is malicious and verbally aggressive. I answer the same questions a 100 times a day, but I am not 'allowed' to ask questions because it means I am 'controlling' him. He has been physical a couple of times, just a really unpleasant person now who is slowly destroying my life. I try and remember that he is ill, but the verbal aggression means I am stressed and anxious all the time. As you say, when is enough enough?
 

john1939

Registered User
Sep 21, 2017
199
0
Newtownabbey
Hi @john1939. Good to have another bloke here on the Forum. Like you I’ve experienced all the dementia behaviour but now my poor Bridget is calm and content in her home. There she is cared for, clean, very little medication and the staff are aware and can do something straight away should she need anything medical. This is all more than I could do with her at home, just the two of us.

I was floundering and completely not coping. I see that now. It’s taking me over two years to admit that. I miss her desperately but she’s with people who can look after her properly
Yes, I fully understand. Putting a loved one in a care home is a massive wrench and produces all sorts of mixed emotions, not least feelings of guilt.
We must take a long term view and on reflection it is for the best. One person can only do and endure so much.