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Can being a carer be rewarding?

SaraZ

New member
Dec 17, 2021
6
0
Hi everyone
My mum has dementia and I am caring for her with her likely to have to live with me. I'm sure I am not the only one who feels this way but can someone help me see past my thoughts of 'Is this my life now?' I feel it is a selfish thought as it is happening to my mum, not me. Can anyone help me see that this could be rewarding in any way? What do people find rewarding, if anything. I really need to hook into something good to help me get through each day. Many thanks.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,096
0
High Peak
If you haven't already moved your mum in with you, I would say 'Don't do it!' and seriously consider the alternatives.

The answer to your question, 'Is this my life now? is yes. Whether you move her in with you or not, dementia will take over your life, as will your mum's needs. Could you get carers to come in several times a day instead?

Sadly, dementia only gets worse. Whatever she's like now is the best she's ever going to be. You need to consider how you will cope in the future, if her behaviour deteriorates, if she wants to go back home, if she starts wandering, maybe at night, when her mobility starts to go and when she becomes incontinent. Could you manage all that? What if she decides she hates you or that you are not her daughter?

I'm sorry to paint such a bleak picture, but so many people have their parent come to live with them without realising just how hard and utterly relentless (and thankless) it will be. People with dementia tend to lose their sense of time so night and day become one, which means the caring job becomes 24/7 - way too much for one person.

You can still care for your mum without having her live with you and without doing everything yourself.
 

SaraZ

New member
Dec 17, 2021
6
0
Hi @Jaded'n'faded
Thank you for your reply. Everything that I have read and experienced so far has taught me the theory of what may come. No one that visits this site is under any illusion that it will be easy or things will get better, I think we all know that very well. However, I was hoping someone could tell me if they found anything in their caring that they find rewarding so that was what I was after in this post. A small glimmer of light, if you will.
 

JHA

Registered User
Aug 7, 2021
629
0
I could so easily be writing your post. I sort of cared for my mom from September until just before Christmas - she lived alone had carers provided by SS for a month then she refused to pay for them so it was down to me (I would go over in the morning then ring late afternoon).

Just before Christmas she had a period of confusion and left her house in the middle of the night. The police rung me when they took her home she was then left in my care whilst all the professionals faffed around formulating a plan.

After nearly 8 days of spending the nights at her house and taking her to my home in the day I admitted defeat and took her to a respite bed in a care home where she was safe and could be cared for 24/7.

Like other posters have said my mom had no sense of night/day. For example on Boxing day she was up at 5am and was still full of life at10pm. Then the hallucinations started and she became violent when I stopped her from going into the pitch black garden. This lasted for another hour then the moving stuff around, packing bags, glaring at me for being there went on until about 2am when she finally crashed and went to sleep.

When my mom had a little more capacity I did suggest turning our garage into an ensuite bedroom for her and her words were 'it will not work' and I am of the same opinion.

Its a tough decision to make and I wish that I was in a position to care for my mom rather than her be in a care home but I know that it is not possible - I have children that need me and they must be my priority.

I am sorry that I cannot offer anything positive to help you and I admire anyone who makes the decision to care for a family member.
 

duchess55

Registered User
Sep 1, 2021
114
0
Sorry, I don’t find it rewarding. I find it hard work and getting harder every day.l

I have no choice, it is my husband.
 

kindred

Registered User
Apr 8, 2018
2,829
0
Hi everyone
My mum has dementia and I am caring for her with her likely to have to live with me. I'm sure I am not the only one who feels this way but can someone help me see past my thoughts of 'Is this my life now?' I feel it is a selfish thought as it is happening to my mum, not me. Can anyone help me see that this could be rewarding in any way? What do people find rewarding, if anything. I really need to hook into something good to help me get through each day. Many thanks.
I agree with jaded but I can offer a little positive. First of all, set boundaries that you will not do this beyond, say, a year or if she becomes truly difficult.
In the two years after his diagnosis, my husband became so nice, so loving, I spent all the time I could with him doing puzzles, colouring books etc etc. this changed dramatically with the onset of incontinence but we did have those good together times.
 

CAL Y

Registered User
Jul 17, 2021
285
0
@SaraZ . I’m afraid that I have to agree with the others.
The only glimmer of light I can offer, from my own experience is that you might feel that you have done a good job after the Person with Dementia has finally succumbed to this awful disease.My husband passed away 12 weeks ago.
Meanwhile, it is relentless, exhausting and soul destroying.
It is an illness which requires a team of trained professionals to deal with and once social services know that your mum is being looked after in your home you will probably have quite a job getting them to take action.
Please think very carefully about it.
 

canary

Registered User
Feb 25, 2014
18,183
0
South coast
You did better than me @JHA - when I wondered whether I could move mum to my house and care for her here I lasted only a weekend! I had exactly the same problems at night and the constant demands and repetitions were mind numbing. Then she had a melt down and I knew I couldnt do it.

Since then OH has been developing symptoms and I am now his full-time carer as he can do very little. I feel my life is on hold too and I am constantly thinking - Is this what it is? Is this my life now? It is all consuming. When I read your post asking what I found rewarding I thought hard and I cant honestly think of anything. I try and keep cheerful and make light of my problems, but the truth is that Ive already reached carer breakdown once and Im in survival mode. The only thing that keeps me going is duty and the understanding that OH has not yet lost capacity and wouldnt agree to moving permanently into a care home. Many people only continue with full-time care because they cant face the (unwarranted) guilt of a care home

You may find a couple of people who find it rewarding @SaraZ , but the fact that we are not queuing up to tell you says it all. If you are already having doubts, then think very carefully about it and perhaps have a "trial run"to see what it is like.
 

Rosettastone57

Registered User
Oct 27, 2016
1,702
0
Don't move your mum in with you. I agree with other posters. In the future, the title to your post won't be can being a carer ever be rewarding, it will have changed to why did I ever think it would be . I can't think of a single positive moment when dealing with my mother in law's dementia
 

nae sporran

Volunteer Host
Oct 29, 2014
9,100
0
Bristol
Hullo @SaraZ.
I've looked after my partner for 8 years and the skills I have acquired with the abilities I never knew I had are positives. Meeting lovely people here, at Music Memories and at Dementia Carers group were a bonus, even if we all wished we met under better circumstance. The rest is hard work that gets harder, sad and awful as that is to say. It's certainly not selfish to think that that though as you can't care for your mum if you are so stressed and overwhelmed you can't look after yourself.
 

Bettusboo

Registered User
Aug 30, 2020
71
0
I’m sure there is some reward in enjoying positive times together. I don’t live with my dad but spent three months with him full time last year. There were some good times in amongst a lot of difficult times but it was mostly draining and by the end I’d had enough. I’m now staying overnight two nights a week and am with him four days. The break in between is essential. Things I enjoy and find rewarding are: singing along with music together, doing puzzles, finding something we both enjoy on the TV (usually sport, Daniel ODonnell or Countdown - I don’t actually enjoy Daniel ODonnell but enjoy my dads enjoyment of the programme), sitting on a bench in the park and watching children play and patting dogs, slowing down and appreciating the small things. I also positively luxuriate in getting home to my family and being in my own space and it’s what I need to keep me going. I invited him to come and stay with me and he refused. I’m glad he did as I don’t think it would have lasted. We have carers for the days I can’t go and I aim to have carers to cover the whole week eventually. So, yes, there can be rewards but the challenges are huge. Looking after yourself and building in breaks is essential and possibly more difficult in your own home but only you know what will work best. Good luck whatever you decide.
 

DreamsAreReal

Registered User
Oct 17, 2015
277
0
Hi everyone
My mum has dementia and I am caring for her with her likely to have to live with me. I'm sure I am not the only one who feels this way but can someone help me see past my thoughts of 'Is this my life now?' I feel it is a selfish thought as it is happening to my mum, not me. Can anyone help me see that this could be rewarding in any way? What do people find rewarding, if anything. I really need to hook into something good to help me get through each day. Many thanks.
Actually it’s happening to both of you. Although you don’t have dementia, it will change your life and to some extent it will curtail your freedom. I think a lot depends on your past relationship with your Mum, your personality type and your own health. It can be very rewarding to know you’ve done all you can to help your Mum and made her life a little easier or more enjoyable. When she’s in an anxious, angry or frightened state and you can calm her and cheer her up, that’s rewarding.

But you won’t find anyone on here who hasn’t been damaged by dementia. I’m not surprised you’ve got these replies saying don’t do it. Most people visit a forum like this because they’re struggling and need advice or reassurance, or just to know they’re not alone. Perhaps there are lots of happy carers out there who don’t feel the need to post on here!

I wouldn’t ever say definitely don’t do it - I think if you really want to do it, you should at least give it a try, if possible. It’s doable for some people. Mum stays with me every year for Christmas and for the last 3 years I’ve tried to keep her here after the holidays, but it never works. After a while she changes from an easily pleased sweet little old lady to an angry stranger, demanding to be taken home immediately and refusing to listen to reason. It becomes an obsession until I give in and take her home. Our record so far is 24th December to 12th of January! And tbh, I think we both breathe a sigh of relief. 🤣

There used to be a thread on here called something like “An inmate in mum’s prison” and it’s very apt. As their world shrinks, so does yours.
 

Thethirdmrsc

Registered User
Apr 4, 2018
627
0
Hi @SaraZ its probably different looking after a parent than a spouse maybe. A parent I wouldn’t move in with me, and a spouse, well you have no choice. I looked after my husband for 5 yrs before he moved into a care home, and it was and is the worst time and times of my life. I would wish Dementia on my worst enemy as it’s the most cruel of diseases, and I got no pleasure or felt rewarded in any way. Sorry to be so down.
 

Wildflowerlady

Registered User
Sep 30, 2019
912
0
My dad didn't live with me but dementia is draining and can almost suck the life out of you. The constant going back and forth to my dads home after mum died was very tiring. Initially it started with popping in daily encouraging dad out with his dog and doing household chores he couldn't manage like his washing. Dad then needed care visits from carers following a hospital admission when my sister found him stuck in a empty bath. We were there almost all day waiting for ambulance crew to get him out and into hospital. I started going to dads in the morning and getting dad up giving him a cooked breakfast leaving around late morning/ lunchtime. Visits then started in the evening as well for about a hour until care arrived to put dad to bed. My sister and I fortunately did share all this doing alternate morning/evening visits. We tried different combinations to see what worked best for us but ensuring dad was being helped as much as possible. This went on for just over three years for me until my partners Parkinson's accelerated and I could no longer keep this schedule up. There were obviously other times that involved my having to go to dads during that time such as shopping or taking him to appointments. My sister didn't drive but she did live within walking distance of dad a short drive for me. I eventually visited dad around four times a week but in the afternoons when I could. I'm afraid to say I got no positive feelings from doing this despite loving my dad, it was really exhausting, stressful and I wish my dad had gone into care because I think it would have been better for all of us. My dads temperament declined and I would sometimes visit only to find he was not in a good mood at all and I had to sometimes leave feeling upset and distressed. My dad did ask both my sister and I if he could live with not long after our mum died because he was clearly lonely but neither of us felt it would work. Dads dementia wasn't diagnosed at that time but there were some signs there and in my heart I knew if he moved in I wouldn't cope for long. My relationship with my sister that had been troubled for many years ( over 20 yrs ) with no contact was re- established in order to help dad. We no longer have contact due to the fact she felt ' I did not do my best 'and in effect says I let her down. My dad passed in January 2021 a couple of months after going into the CH with very advanced dementia.
 
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RosettaT

Registered User
Sep 9, 2018
764
0
Mid Lincs
It's doable for me but my OHs character hasn't been affected, he is sweet, kind and compliant. His Alzheimer's has affected his physical being more than his mental one. Although there is a great deal of mental deterioration too and he can no longer make decisions.

He is 100% reliant on me as he is immobile, non-verbal, has spasticity in both hands so can't feed himself and is doubly incontinent, but none of that bothers me. He blinks for yes, shakes his head for no. He is happy, and pain free and still knows who I am, so I get immense pleasure from looking after him BUT that is because I get no mental anguish.
As said above in some posts, it will depend on how your mum progresses and none of us can know that. If you want to try I would say give it a go but be prepared for a rethink down the line and never think you have failed her. Beware it will change your life and you may lose your friends as you see them less often and they go out to do things you may not be able to.

All we can is our best and that depends so much on circumstances.

Good luck with whatever you decide.
 

Pork Pie lady

Registered User
Mar 16, 2013
72
0
Anglia
Please think very carefully about moving her in with you. Yes, this is your life and it will only get more difficult if you take on more caring responsibilities. If you are able to arrange professional carers to go in and some respite care it would ease the burden on you. When this is unmanageable she can go into a home. We are no good to our loved ones if we are constantly stressed, exhausted and unhappy. By removing the weight of physical care you will be able to give her more quality time to do things you both enjoy even if it is only watching your favourite tv programme together. You will also be able to have a life of your own.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
2,243
0
Newcastle
Hi @SaraZ You probably feel rather downhearted after reading the replies to your post. Try not to be, as everyone's situation is different and dementia develops differently too. None of us can give you certainty, but I hope you feel that the honest responses from our members paint a realistic picture.

I read early on that being a carer can be rewarding. I looked for but never saw any sign of this in several years of caring for my wife.. Being ground down everyday by everything that her dementia threw at us left little time for positive thoughts. If there were rewards I was too stressed to see them.

I would agree with @nae sporran that some good things can happen during times of adversity. But I never felt rewarded until after my wife moved permanently into a care home. Freed of the stress and impossibility of being her sole carer, I found time to rebuild a few scraps of our former relationship. Now, my rewards come when she smiles when I visit and is comfortable in my presence. Holding her hand, talking, playing silly games, or sitting quietly together are small intimacies that I treasure. That is about as good as it gets.
 

Jale

Registered User
Jul 9, 2018
663
0
Mum didn't live with us as it wasn't practical for a number of reasons, but she did come and stay with us twice for 3 months each time, once when she was recovering from an op for skin cancer and the 2nd time when she was sent home from hospital with pneumonia. We had to move a bed downstairs for her as she couldn't get upstairs and we don't have a downstairs bathroom so it was a commode in the corner. I slept on our sofa because she would try and get out of bed in the night and was at a risk of falling/hurting herself, so I was functioning on very little sleep
I did what I had to do - meals, washing both her and clothes and bedding, trying to keep her spirits up I couldn't leave her for more than 5 or 10 minutes at a time. Did I find it rewarding? I am ashamed to say no I didn't, it was hard work and it nearly broke me physically and mentally, would I do it again of course I would she's my mum (now in a nursing home) but I still wouldn't find it rewarding.
I think a lot depends on how advanced your mum's dementia is and if she is still capable of doing some things. My mum doesn't remember me now in the main but I can now visit her in the home and although we can't have a conversation now sometimes just holding her hand and her letting me do it is rewarding.
I wish you well with whatever you decide
 

LynneMcV

Volunteer Moderator
May 9, 2012
4,224
0
south-east London
Hi @SaraZ, my circumstances are different to yours in as far as I cared for my husband after he was diagnosed with dementia aged 58. Naturally, he was already living in the family home, as were our son as daughter, so there wasn't the big shift that comes from moving someone into the family home to be cared for.

Was our world turned upside down as my husband's dementia progressed? Absolutely. Were we pushed to the limits of what we could cope with, left fretting about how much more we could take? Definitely. Was it rewarding? For myself and my son, undoubtedly - for my daughter, no - in fact 3.5yrs since my husband/their father passed away my daughter still struggles with her mental health as a result of what we faced.

All I can say for myself is that, for all the trials and tribulations along the way, I grew closer to my husband than I ever dreamed possible. I got to learn about the person he was before I came into his life, I got to meet what I call 'the child within' and through glimpses of that past I came to see how my husband became the person I knew - and I grew to love him even more. Amid the heartache there was also a lot of laughter and happiness along the way and I know that having him in the home with me made it far easier to keep an eye on how things were changing and to put things in place to keep him safe at home with us for as long as possible. I found it rewarding to see him happy and enjoying our family life, outings and activities (which he did, for the most part). Dementia can destroy relationships but in our case it definitely brought us closer - and that particular reward still brings me comfort today.

As for the parent/child relationship my son would say much the same as me. Don't get me wrong, he didn't come through this unscathed and even had to pull out of his university course for a year when the stress of our situation became too overwhelming at times. Despite that, he returned to uni, gained a Masters degree - all the while doing what he could at home to help me support his father. They became best buddies. In fact, after his father died my son told me that, looking back, he didn't regret a single moment of spending time with his dad and helping to care for him because, without the illness, he probably would not have come to know, understand and love his dad as much as he did.

As I said earlier, my daughter's experience was totally different. Watching her dad become more and more helpless, confused and (at times) aggressive, was more than she could deal with and she still lives with those feelings of trauma several years on.

So yes, caring for a loved one with dementia at home can be rewarding - but sometimes the price paid can be too much.

Whatever you decide to do in your personal situation, you will find a lot support and understanding here from others who are experiencing the roller-coaster life of dementia.
 

Duggies-girl

Registered User
Sep 6, 2017
3,234
0
Hi @SaraZ It is not selfish and I had the same thoughts 'Is this my life now' and yes it was. I am trying to look at the good side of being a carer and I went from being a part time carer to a full on 24/7 carer in the space of a few short years. I was lucky in that my dad remained right up to the end, good humoured, witty, funny, pleasant to be with and most importantly fully continent.

I feel that I should be grateful for these things and I promise you that my dad was a pretty rare case, most PWD's are not so easy to care for. It still wore me down and I still have not recovered even almost two years later. Was it rewarding? Well I kept dad in his own home which was what he wanted although I am sure that he would not have wanted me to be stressed out 24/7 and in a high state of anxiety all the time.

The good things were that we had some fun and I learned a lot about dad and his life (which was very interesting) and all about when he was young. We became very close and I am grateful for that. I also learned a lot about my grandparents and dads siblings so that was rewarding but it all came at a huge cost to me and my mental and physical health. It also cost me my relationship with my sibling who did not want to help in anyway so now I have no immediate family but I don't consider that a great loss anymore because I think that relationship ended many years ago.

So there you are, there were some rewards but I think the costs were very high. Would I do it again? probably because he was my dad and I loved him but I would rather not have had to and I know that if dad knew what it was like then he would not have wanted me to. I have told my son that if I start showing signs of dementia then he is to put me in a home and then run away as fast as he can and go and live his own life.