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Wellbeing discussion - checking in with each other and sharing practical advice

Bridget202

New member
Jul 14, 2021
1
0
Hi everyone, and welcome to our wellbeing discussion!

Whether you have dementia, or you care for a loved one with dementia, wellbeing and mental health are just as important as physical health.

We wanted to check in with all our members and ask the all-important question, how are you?

This discussion is a chance for you share how you feel, ask and answer questions about wellbeing, and share practical advice with other community members. This way you can share your emotions and advice with others who understand and have lived experience to share.
Hi I’m Bridget caring for my 83 year old husband who was diagnosed with Alzheimer’s 3 years ago.. I’m ten years and have lost interest in any sexual relationship but my husband although impotent is still very needy and constantly wants attention in that department. I find it very very difficult emotionally to respond and he gets upset and angry. Am I being selfish. I care for all his needs and love him but not sexually any more.
 

canary

Registered User
Feb 25, 2014
16,776
0
South coast
Hi @Bridget202
I think there are probably quite a few of us in the same situation - I know Im one of them.

I always remember a member who was on here several years ago now who used to say to her husband "oh darling, Im so tired. Weve already done it six times today and I just cant keep up with you........."
She said it made him feel proud of his prowess (even though it hadnt, in reality, actually happened) and she could then distract him with ice cream or tea and cake, or whatever.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,280
0
Hi I’m Bridget caring for my 83 year old husband who was diagnosed with Alzheimer’s 3 years ago.. I’m ten years and have lost interest in any sexual relationship but my husband although impotent is still very needy and constantly wants attention in that department. I find it very very difficult emotionally to respond and he gets upset and angry. Am I being selfish. I care for all his needs and love him but not sexually any more.
I don’t think it’s selfish to put your needs, wants & desires on a standing with that of your husbands.
Caring for anyone will change the dynamic , that’s a natural consequence.
Sadly both my parents became more sexual during mid to late stages. The loss of inhibitions perhaps , my solution was to buy a giant cuddly toy .
Seriously … it became a comfort , something to squeeze & cuddle up to . My Dad a giant rabbit & mum has a giant panda .
ikea do a fab range of washable toys in a variety of sizes that are affordable.
That comfort of close contact just like a child was filled by these giant toys.
I don’t know if you think it will be worth a try - but the toy also acted as a barrier in the bed !
 

DesperateofDevon

Registered User
Jul 7, 2019
3,280
0
Ok I feel a bit pathetic posting on this thread about well being .
im at the broken stage , so run down & low & I can’t see a way out until my loved one reaches a natural conclusion . I’m ghost walking through life & can’t seem to get my life priorities in order. The guilt of never being able to do enough has been & still is crippling . I know that to change how I feel I must be the person motivated to make changes, but each time I try something else needs sorting or chasing & if I don’t do it no one will. Dementia has taken soo much from not only the person diagnosed with it but from family & mostly me.
I just wanted to say this as I know that others may feel the same & feel ashamed to vocalise their thoughts & feelings .
im not proud of the way I feel & that to becomes another guilty burden , but it exists & I need to accept that it’s not the person , but the disease & the whole process of caring.
please don’t judge , I judge myself constantly & find myself weak & lacking ; just saying no one is unique in feeling like this , you aren’t alone
X
 

CAL Y

Registered User
Jul 17, 2021
172
0
It’s early days for me but I keenly feel that I have lost my identity.
We were the couple who are always going on their travels and overnight we didn’t have that anymore.
As someone else has said I don’t want to sit at home,I still feel that I have plenty more life, even at 70.
I’m heartbroken and resentful at the same time.
This morning I hadn’t even opened my eyes before the barrage of questions started. All repeated over and over of course.
I have a painful disability myself and sometimes just cry and think why can’t someone look after me for a change.
 

Banjomansmate

Registered User
Jan 13, 2019
3,397
0
Dorset
@DesperateofDevon I have had to give up reading your thread because it was probably sending my blood pressure sky high. The sheer stupidity and incompetence of the people you are dealing with is beyond belief. I understand that NHS staff are under pressure but what you are trying to cope with is ludicrous!
What is the point of claiming the need to get a patient out of hospital a.s.a.p. then doing your damndest to thwart that process?
You need feel no guilt in that you have failed your parents because you have done your utmost on behalf of both of them but there comes a time when the forces against you are too great and it seems Cornish hospital trusts are a behemoth of incompetence.
 

Thethirdmrsc

Registered User
Apr 4, 2018
563
0
Dear @DesperateofDevon you are certainly not weak or lacking in anything. I have only been on this journey for 4 years, and my energy is getting depleted, and I’m only 61. My OH is the baby I never wanted but I’m forced to look after, and he is sucking the life from me, and I am tired of putting him first.
 

CAL Y

Registered User
Jul 17, 2021
172
0
Dear @DesperateofDevon you are certainly not weak or lacking in anything. I have only been on this journey for 4 years, and my energy is getting depleted, and I’m only 61. My OH is the baby I never wanted but I’m forced to look after, and he is sucking the life from me, and I am tired of putting him first.
Thethirdmrsc: Oh how your words resonate with me. The baby I never wanted.
 

CAL Y

Registered User
Jul 17, 2021
172
0
@Banjomansmate @Thethirdmrsc your support & kind words are much appreciated ♥️
Desperateofdevon. I feel desperately sorry for you . Your situation is horrifying.
Vocalising your feelings is nothing to be ashamed of.
I have only been on this forum a couple of weeks but being able to reveal your darkest thoughts and feelings to people on here who you know won’t judge you and indeed have exactly the same feelings I find very liberating.
 

Poole

New member
Nov 28, 2021
1
0
Hi everyone, and welcome to our wellbeing discussion!

Whether you have dementia, or you care for a loved one with dementia, wellbeing and mental health are just as important as physical health.

We wanted to check in with all our members and ask the all-important question, how are you?

This discussion is a chance for you share how you feel, ask and answer questions about wellbeing, and share practical advice with other community members. This way you can share your emotions and advice with others who understand and have lived experience to share.
How am I? Not coping, diagnosis came in April for my dad. He has deteriorated so much. Every time I visit he is different. My step mum, wont call with updates on him, what can I do? I work full time and try to visit as often as i can. Although this on my last visit to her was not good enough. I feel whatever I say or do is just not good enough. My doctor has put me on anti depressants now. I need help and advice please.
 

silkiest

Registered User
Feb 9, 2017
513
0
Hi @Poole, welcome to the forum. You will find a lot of information and practical advice here as well as support. I am sorry you are at the start of this journey with dementia.
Your step mum is probably feeling lost and helpless too, if you and stepmom have had a good relationship in the past maybe lashing out at you is showing her stress levels. My parents are still together after 67 years and even though it is my dad living with and looking after mum there are still a lot of problems and dad is unhappy.
My brother said the other day that the only way dad would be happy is if I moved in and was their full time slave with no outside carers :oops::oops:
Sometimes looking after the person with dementia does not leave much time for doing practical things for the upkeep of the house. Are there things that MIL is struggling with that you could do from home - dealing with utilities, care agencies etc. Would this make her feel better and be happier with you?
If you do not have power of attorneys set up yet and your dad still has capacity to consent to this you could start doing the online forms for them at https://www.gov.uk/government/publications/make-a-lasting-power-of-attorney
If you or any other siblings were set up as attorneys as well as your stepmom this would help with dealings with the NHS and other officials in the future.
 

Roman223

Registered User
Dec 29, 2020
118
0
Hi all. I went to visit my mum today at the care home after a 4 week break as they had a few outbreaks of Covid! It was her birthday today. She looked well. She never smiles or laughs. She used to. She called me my sister's name but when I asked her 'do you know who I am' she did say yes and my name! So I was relieved she did still remember me. I was worried that she may have been wondering why I had'nt visited but she did not. I don't think she would have known if I came yesterday or last month. How I am? I find myself crying every day. People ask me how I am and I reply I'm fine but really I'm not. The last 2 years have been the worst and hardest of my life - with mum getting a diagnosis of dementia and then falling ill and being in and out of hospital and there have been times when I did'nt know whether she was going to make it! When I've had calls from the hospital to come quickly as they did not think she was going to make it through during the night. Then she pulls through. The hardest part is for us carers. I feel depressed, down, teary, my eyes are swollen from crying every day. I also at times feel angry and want to smash things. I have asked for support from Social Services but they signpost me to a local carers centre of which I am already with. I feel I need weekly support someone I can talk and rant to. I guess Mum is ok - it's me that's not .... Hopefully writing this will release some of my feelings.
 

nae sporran

Volunteer Host
Oct 29, 2014
8,741
0
Bristol
Such a hard time for you for so long it's bound to take it's toll on you @Roman223. I have found both counselling and CBT helpful in the past. There's about a 3 month wait where I live, but may be worth asking your GP for a referral all the same.
 

Roman223

Registered User
Dec 29, 2020
118
0
Thank you nae sporran for your thoughts and advice. I have been having counselling for the last few months - in some ways it's helped me and other times I don't feel it has. I've never tried CBT. Will have a word with my gp.