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

Maisie1

Registered User
Dec 24, 2019
11
Some days am better than others. I struggle with repeating myself over and over and find myself snapping at my mum occasionally when I have told her something the same over and over, my mum doesn't get upset but I do. I write everything down for her keep things in the same place have the same routine. I'm wondering if anyone had any more ideas how to help with this. Thanks
Hi, this sounds exactly how I was with my lovely mum. I lost her 30th December just gone. We wrote things down, but still we had to go over everything countless times and yes I would snap at her, then feel guilty tell her I loved her and I was sorry for snapping. She would say I had nothing to be sorry for and had done nothing wrong. I’m crying now as I’d give anything to cuddle her.
 

Ziggy Starshine

Registered User
Jan 31, 2015
12
Watching my partner struggle with simple things and get so down is hard to watch. I get frustrated with her, then feel guilty and sad as I see her so frustrated with herself. If she didn't get to her lunch club she would only get off her chair to see her daughter once a week and I would only get out for short walks on my own. That situation was giving me panic attacks 3 years ago. Since she started her club I joined a ramblers walking for health group on that day and have made a few very good friends I would otherwise not have time for. One friend's niece's mum has dementia far worse than my partner, so she knows something of what I talk about. Getting away for four hours, having a good chat and a friendly hug goes a long way.
How are you all coping?
I know your loved one is ill but you don't need this. You also have a life to live. Find a nice residential care home where your partner is safe and you also can have a life. I know I sound awful but they too will benefit, if a good home.
 

Mustang66

Registered User
Nov 27, 2019
55
Well I’m rediscovering myself after my husbands death in October. It is quite strange having responsibilities only to myself. I have started a Tai chi class twice a week, a Health Walk, I’m learning patchwork quilting by following a series on YouTube (very good) and I’m out and about as much as possible. We met when I was 16 and married when I was 21 so at 75 I really am in an unknown space.
Very positive to hear & well done you.. I also met my husband young like you, I am thinking what we deal with makes us stronger people because we have to be, we are five years on from his diagnosis BV FTD although the signs were there in his 50's, your attitude is inspiring
 

grpop

Registered User
Nov 17, 2016
5
I must be very lucky! My wife was diagnosed with vascular dementia 7 years ago. I have never allowed her to sit back and let me do everything. She can still make a cup of tea tho not carry it, unpack the dishwasher, but not pack it all away, still dress and undress, tho not always properly. I make her exercise every day, often bribing her with treats! I can walk the dog while she watches uk gold, the same programmes over and over again. She makes unkind remarks and is unappreciative and It is a nightmare getting her bathed as she now hates water
 

Rencat

Registered User
Nov 15, 2018
12
Asking if everyone is okay, we’ll as you can see by the majority of replies the answer is no. I’m still looking after my partner who has early onset dementia, I was also going to ask how many people with the diagnosis has my partner’s symptoms, she’s been diagnosed for a year now and has lost the ability to read, write, tell the time, doesn’t know what day of the week it is. The memory clinic she went to twice were useless, gave the diagnosis, medication then said there wasn’t anything else they could do and just pointed her in the direction of support groups in our area. She had her licence revoked, I’m disabled and don’t drive either anymore, we live in a small village in the middle of nowhere so the hours she had been given through direct payments are used up Just driving too and returning from these groups. My mild mannered partner who spent 25 years in the police force before retiring to look after me, the roles have completely been reversed and I’m really struggling and on the verge of ending it all. I just can’t do this anymore, I cry myself to sleep every night. As we now sleep in seperate rooms
 

White Rose

Registered User
Nov 4, 2018
541
Asking if everyone is okay, we’ll as you can see by the majority of replies the answer is no. I’m still looking after my partner who has early onset dementia, I was also going to ask how many people with the diagnosis has my partner’s symptoms, she’s been diagnosed for a year now and has lost the ability to read, write, tell the time, doesn’t know what day of the week it is. The memory clinic she went to twice were useless, gave the diagnosis, medication then said there wasn’t anything else they could do and just pointed her in the direction of support groups in our area. She had her licence revoked, I’m disabled and don’t drive either anymore, we live in a small village in the middle of nowhere so the hours she had been given through direct payments are used up Just driving too and returning from these groups. My mild mannered partner who spent 25 years in the police force before retiring to look after me, the roles have completely been reversed and I’m really struggling and on the verge of ending it all. I just can’t do this anymore, I cry myself to sleep every night. As we now sleep in seperate rooms
Dear @Rencat please find yourself a carer to help - use the Attendance Allowance to pay for some care. Have you had a Carers Assessment - you really do need help. The GP might refer you to Cognitive Therapy - it really helps to have someone to talk to - I found our GP to be a waste of time regarding my partner and the Alzheimer's but they were concerned for me when I was depressed. Have you phoned the Alzheimer's Society helpline for some advice. Also there may be voluntary groups who could come and pick you up to take you to the GP or wherever you need to go. Can you get a week's respite care - it sounds like you desperately need it. Your wife seems to be at a similar stage to my partner - though I'm guessing your wife younger - it's 4 years since his diagnosis, it's a struggle but I'm luckier than most. Your wife has the illness but it doesn't need to be your illness as well. I am very worried for you. When I was very low and not coping my cousin got me to phone the Alzheimer's Society helpline and it was a really good start in pointing me in the right direction for support, they are very understanding.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,801
Bristol
Sorry you feel so down @Rencat. Have you had a carers assessment recently, or your partner had a care needs assessment ? I am just thinking you need urgent respite and social services should help set that up. Call them and say you are unable to cope and you are both vulnerable.
The national dementia helpline can offer a place to talk about your low mood and to get moral support as well as practical advice.
Call them on 0300 222 11 22

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

If you are feeling really down and can't wait for the helpline to open the Samaritans are really good too, on 116 123.
 
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Moose59

New member
Nov 28, 2018
3
So many people and so many different experiences! My mums been in a care home since early summer so I’m definitely one of ‘the lucky ones’! She’s now getting full time care, meals, washing and company. My wife and I are still trying to find out what kind of visiting is best though. We can go in every second day but feel that stops mum from being a whole part of the carehome. By that I means she was becoming more and more detached from the other residents so we changed our visits to once weekly and even to 10 days apart. The downside of that was when we did visit we were met with massive ‘miss you’ behaviours, to the point of mum having the anxiety attacks, severe sobbing and wanting to go home! It’s all trial and error but the main thing is mums in a safe place and being well looked after.
The following may explain all the different experiences we have; My wife works with Alzheimer’s Scotland and during their training were told to liken the brain cells of an Alzheimer’s patient to a row of Xmas tree lights. On a particular person there will be a few bulbs not working, on another person it’s different bulbs that aren’t working and so and so on. These bulbs are slowly burning out and switching off, everyone in a different pattern. Now this isn’t a scientific explanation by any means but it certainly helped me understand how the illness degenerated. Not sure if this is allowed but for those who have experienced the ultimate loss of a loved one and are finding it hard to fill the gaps in their lives or come to terms with their loss, I work in funeral care and there are bereavement drop in groups in Aberdeen and Fife. I started the group in Glenrothes Fife and we meet on the first Tuesday of each month for a chat and to share experiences. No professional advice or counselling, just a natter, cup of tea and waaaay to many biscuits. Take care everyone. G
 

canary

Registered User
Feb 25, 2014
12,201
South coast
I am coping - just.
A couple of months ago I reached carer breakdown and OH had to go into respite. Im now on antidepressants and am in the process of organising carers and day care. We were offered them 18 months ago, but OH refused them. Its now time to stop enabling his wants and start implementing his needs
Dont let it get that bad for you.
 

Fred2

Registered User
Jun 11, 2015
7
Hello Sophie, what a good idea to ask how we are doing! Thanks for that. Looking at other recent postings I realise how very different all our problems are, and that there is no model way of coping that will suit us all.
Our situation is that my wife and I, both aged 92 both live at home in our own house. I am her full-time carer. She was diagnosed with Alzheimers about 3 1/2 years ago. We don't have any formal support except we pay for a cleaner for an hour once a week.

We are very fortunate in several important respects. Our house is in a town centre so that shops and essential services are in walking distance (I don't drive). My wife's general health is good and her basic good nature is quite unaffected although her memory deteriorates by the day, and she has a tendency to stay in bed a lot even during the day. We have great neighbours and a very supportive family who visit frequently.

We have a couple of social events that are very important to us. One is a 1-hour session at a local café for cares and people suffering from dementia and similar problems. The is run by our local Dementia Friends organisation and is a great success. The other is a Scrabble game with a neighbour every two weeks.,

A real problem is how to be able to leave the house on my own for shopping and other events My wife has an alarm pendant but it's a bit of a clumsy affair and not particularly reliable or suitable for home use. Much more useful is a security camera system that allows me to see any of the four main rooms on my mobile phone.

As a hobby I play the violin which has the advantage that I can practice at home although I do manage to go out and play with groups.

A major concern is to stay well enough to do all the domestic tasks, although fortunately my wife remains for now able to look after her personal needs. I do suffer from potentially life-limiting health problems but try not to spend time thinking about that.

I find it's best to take things a day at a time and plan for essential foreseen problems, but at the end of the day I'm afraid I just kick the longer term problems down the road!

Apologies for the long screed - it just kept coming once I started!
 

Chrissieislander

New member
May 1, 2019
3
I have one sister who is really supportive and helps with the 24 7 care of dad, who is 90 with vascular dementia.
The other sister lives away and can't acknowledge any change in dad, she talks at him, doesn't give him prompts to help him answer, just raises his anxiety...and mine!
I generally manage my stress, and reading these posts does help but she's visiting in 2 weeks and I'm already panicking!
 

Chrissieislander

New member
May 1, 2019
3
I'm sorry for your loss, it must be s
I am "getting through the days" but not really OK. How do others cope when caring for someone at mid-stages who is verbally abusive, sarcastic, can say some very hurtful things, is unaware of how much he cannot do (and that I just get on with) has a very odd view of reality and reasoning, wants everyone to laugh at his "jokes" but they don't make sense to me, etc?
Who am I? is a question that keeps coming up in my mind, along with "what is my purpose in life" (other than being the best carer that I can to the person that I promised to care for "In sickness and in health"?
Previously I've known who I am, what I want to achieve, what my goals are, but now it is just a black hole.
 

Chrissieislander

New member
May 1, 2019
3
It must be hard, I understand about watching a parent deteriorate, I sometimes think it's like role reversal!
Hopefully there will be something from her review that will help.
Take care
 

papilion

New member
Sep 26, 2018
7
Hard to explain really as we are both in our late 70s and as well as ALZ my better half has 'compromised lungs,' from pneumonia, Osteoporosis, and poor mobility and yet is suprisingly able at looking after herself in many ways. The problem for me is constant worrying, absolute boredom from constant TV repeats and zero conversation on anything other than her sons, the abscentees. Depressed, yes I probably am in some ways and tired, that also but am still positive in believing that I will get time away in my little motorhome once the weather picks up. Ah, well.
Hi late reply ,poor mum heading for a demetia care home
 

Am59

Registered User
Jan 18, 2020
22
Hi, I'm a new member as my husband was only diagnosed with Parkinson's dementia in October 2019. He's in the mild stage they say but he's been doing odd things for a couple of years and has been diagnosed with Parkinson's for 9 years. I'm 60 and he's 73. When he was diagnosed I felt fear and despair although it wasn't a shock. I know it's selfish but I was resentful. I could see my 60's being one long round of hospital visits, frustration and care. It's like a one way street. I've lost my best friend. He doesn't have much empathy now so if he does something that upsets me he never says sorry. I know he can't help it. I see my friends booking holiday's, going out for meals, sharing good times. We went away for a few days in September and it was such hard work I vowed not to do it again. We sleep in separate rooms. I don't feel like his wife anymore (after 38 years of marriage). I feel like a carer. Sorry for having such a moan but it's like being on a ride that I didn't want to be on.
 

EllieJ

New member
Dec 17, 2019
2
Mum has been living with dementia for 5 years, mixed Alzheimers & Dementia. Dad has been caring for her full time, but sadly she deteriorated after a spell in respite & hospital so they now have carers in a morning. Myself & 2 siblings think the time has come for full time care in a home but my 81 year old dad does not agree, although we are not really sure what he is waiting for as he soon changes conversations. I live nearby, so am always on call when needed, my siblngs both live further away but are very supportive and visit when they can, usually weekly. Mum is now in the later stages, fluctuating and so unpredictable daily . . . . Not sure how long we can continue
 

magos70

Registered User
Apr 21, 2017
7
My mam is in a nursing home now, for the past 10 months. I live over 200 miles from her so while she was at home it was extremely stressful. I was constantly on edge. We had carers 24/7 for the past 6 months at home as she couldn't be alone. with my siblings we covered weekends, usually every second weekend, travelling up on Friday after work and returning Sunday night. Any time I took to myself was considered selfish by my siblings. I tried all sorts of things to help mam, bought a diary to record her day, got a clock that told the day, date and time, cleared out clutter from the house, labelled items but nothing worked. I brought her to all the doctor's appointments, made endless phone calls, wrote letters,liaised with the dementia care team, organised day visits to the nursing home, arranged the carers. I was exhausted. I really felt my life wasn't worth living. I ended up fighting with my siblings over everything and now we only communicate about mam and her care.
I have lost my mam. My dad died suddenly 8 years ago and mam never dealt with it. I now feel like an orphan (I'll be 50 this year!). My husband has been my rock. he has listened to every gripe, complaint, worry. He encouraged me to take time for myself and to go and see my G.P. My blood pressure was very high so I ended up on medication and he suggested I talk to a psychologist. My husband supported me in everything and he was fantastic with mam, encouraging, distracting when necessary, playing music she liked, finding tv programmes that might interest her. Without him I would not have coped at all.
The last thing dad told me was to look after mam. But at Christmas 2018 I realised that I wasn't really looking after her. She had no idea who I was or where she was (in her own home). Mam's wellbeing was not being looked after at home. Now, in the nursing home she is so well cared for, she is content and safe.And my time with her is quality time now. We look at photos, go for a spin, get ice cream, look at the sea. Although it is heart breaking to see my once competent, confident, capable mother reduced to this, I know it was the right decision. My own wellbeing was non-existant while she was at home. With my family, my job, the travelling, it was hectic. I was barely coping. while she was at home I was constantly on edge, worried, dreading a phone call or email. Caring for a PWD does not allow time for one's own wellbeing unfortunately. A close friend reminded me of the airplane and putting on my own oxygen mask first. A good idea because if we are not ok, we cannot care for our loved ones.
 

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