Put yourself first

[Lisa74]

Hi All,

My much-loved grandmother has died but the impact of her dementia on the health and wellbeing of my immediate family continues.

It's so important to put your own health, wellbeing, happiness (and social, work and family life) first as far as physically possible.

 

[Kevinl]

No it isn't. Just my opinion.
K

 

[Saffie]

I'm definitely with Kevin in this. We have control of our own lives but sufferers of dementia do not. They need us.

 

[Ann Mac]

Hiya Lisa,

Initially, on reading your post, I think my response was similar to Saffie's and Kevin's. When you love someone, who has this awful disease, most of us find it absolutely impossible to put 'ourselves first', not only because we love the person we are caring for, but because we are all, always, aware that having this illness is so horrendous for the sufferer and that they really need us.

Then I read your other post, about the impact on you and your family, and I think I understand where you are coming from.

I had my Mil living with me for nearly 3 years, and for several years before that, had supported her in her own home. She and I were very close, pre-dementia, she was one of my closest friends as well as being my Mum in law. The three years that she lived with us (prior to going in a home) were probably the hardest, most stressful 3 years of my life. But it was only after we had to make the decision that we could no longer cope (because she became physically violent) and that residential care was now the only option, that the impact of those years actually caught up with me. As well as sadness and guilt (and there was a lot of both of those emotions) I found myself quite angry and bitter. I felt like I had 'wasted' 3 long, hard years of mine and my families life - and for what? Made no difference in the end, dementia 'won', she ended up in a care home! I had feelings of anger towards my husband - he had always, always said that as I was the main carer, if it all got 'too much', I only had to say - after Mil went into a home, and I was really able to take stock of what we had all been through, I found myself angry that I had been expected to 'just say', I felt like he should seen for himself how hard it was and he should have stepped in and made the decision about a CH much sooner. I was exhausted, I couldn't sleep, I cried buckets, I lost motivation and had no energy, I felt a failure - and I was just as bitter, and angry and resentful, as I was sad and guilt ridden at 'putting Mil in a home'. I wished - many times - that I had never, ever agreed to care for Mil and I resented the impact that it was now having. I guessed you could say that I wished that I had put me and my family first.

I had the added worry of my now 15 year old daughter - if I was feeling like that, I stressed a lot about what the impact had been on her

So I think what I am trying to say is that hard as the time spent actually hands-on caring is, the aftermath can also be incredibly difficult to deal with. I went to see my GP (after my OH had nagged me into going), who was completely understanding and told me he had actually been expecting me to show up at the surgery, feeling like that. He was amazed that it had taken me so long to go there. I explained about the anger, and the regret and resentment at the 'wasted' years, at feeling angry at my OH, guilty about my daughter - and that I also felt guilty for feeling like that about my OH, guilty for resenting looking after Mil and guilty for the feeling of relief that I was no longer the hands-on carer. We talked, and he urged me to try a course of anti-depressents, and I agreed. It's taken me several months to get over (mostly) these feelings - and there are still times when I feel low, though less often now - but it was the best thing I could have done. The resentment has gone, I can find some comfort in the fact that I really did my best to look after Mil whilst she was here with us and the feeling that those years were 'wasted' has vanished. After being unable to work, after losing contact with several friends and feeling isolated, at the age of 53, I have a new job (which I adore) and have reconnected with some friends, and made new friends with others. I've even found that the hands on caring years have given me experience that has helped with my new job, and I think have made me a more patient and appreciative person. Took a while for me to get to that point though, to be honest

Please go and see your GP, listen to his/her advice, go to counselling or consider a short course of medication to help you cope with how you are feeling. I know its hard, but if I can get my life back on to a track that has made me happy in my 50's, I am sure that you can do the same in your 20's.

I hope this helps xxxx

 

[Chemmy]

I think your honesty is appreciated, Ann Mac.

And as has been said before, looking after a spouse is very different from looking after a parent, let alone an in-law or a grandparent. My grandfather lived with us from when I was 7-15, so I get where Lisa is coming from.

 

[Pickles53]

As a parent, I would say that the very last thing I would want is for my daughter's, son-in-law's or grandchildren's lives to be sacrificed to looking after me if this awful disease comes my way. I want them to find me the best care possible (and will try to make sure I save so I can afford it) and then get on with their own lives. Probably no inheritance for them if the worst happens, but their lives are more important than that.

 

[RedLou]

I echo Pickles. Having done this as a daughter, I don't want it for my daughter. I've told her to place me in a home and never visit me: I don't want her memories of me polluted. Take care, Liza. *hug*

 

[Saffie]

I echo Pickles. Having done this as a daughter, I don't want it for my daughter. I've told her to place me in a home and never visit me: I don't want her memories of me polluted. Take care, Liza. *hug*

My memories of neither my husband nor my mother are 'polluted' in any way.
They are tinged with sadness at the suffering they both endured in the dementia years and yes, at times these were very difficult but I cherish all the years I had with both of them.

 

[Beate]

I'm with Lisa on this. It's exactly what my stress counsellor told me. She said in a plane emergency we're always told to put our own air masks on first, then put on the ones of our dependants because if we can't breathe, we can't help them. Our natural instinct would be to help them first but if we're not healthy we are of no use to the people we care for. We shouldn't sacrifice ourself for others, and if we really can't do it anymore, we have to step back for the sake of our own health and wellbeing. I'm not saying it's easy because our instincts go against it, but we have the same right to happiness as everybody else, and it's really what we tell people here everyday.

 

[Chemmy]

I sat my mock O-level in English the morning after Grandad died in hospital. I don't remember shedding any tears - and he was a very nice man. Despite sharing a house with him for all those years, looking back, I think I became emotionally detached; with the feeling of simply wanting it all to go away and being a 'normal' family.

 

[marionq]

Oh this is a tricky one to get right!

If I had put myself first I would have my husband in a home right now as SS advised two years ago. I had a look at a few and I couldn't do it. The one I liked didn't have a vacancy and by the time it did have space I decided I could cope. Many times since then I have wondered how life would be if I had indeed put myself first.

I'm not going to dwell on love because it changes dramatically in these circumstances and the feelings I have now about caring for my husband are nothing like the feelings I had before all this kicked in.

I do try to keep myself healthy and I am generous to myself where possible but I cannot leave my husband for even ten minutes so putting myself first is a bit meaningless in some contexts.

The best thing for me is that he goes to daycentres where he is fed and entertained and I get a break. The worst is never being able to go out in the evening or just impulsively go for a walk or visit a friend. Is this what is called a zero sum situation?

 

[RedLou]

My memories of neither my husband nor my mother are 'polluted' in any way.
They are tinged with sadness at the suffering they both endured in the dementia years and yes, at times these were very difficult but I cherish all the years I had with both of them.

Well, I'm glad for you. It's nice it worked out for you that way. Sadly for me my good memories of my father have been contaminated by his behaviour towards me during his last months. Which is why I don't want my daughter to have the same experience.

 

[Saffie]

Well, I'm glad for you. It's nice it worked out for you that way. Sadly for me my good memories of my father have been contaminated by his behaviour towards me during his last months. Which is why I don't want my daughter to have the same experience.

No. It isn't particularly good for me. I am haunted by regret, guilt and grief. However, every relationship is different and I really think there is no blanket conclusion possible for this discussion.

 

[Shedrech]

I wonder whether there's something about choice here, and the state of the relationship pre-dementia - many carers feel that they had the role foisted upon them and that the caree's needs completely dominate the situation - I do wonder how the family members of carers feel about the time and effort put in by the carer at a cost to their health and welfare, when the rest of the family can do little to help or change a situation they have very little choice in or control over; which I think is Lisa74's situation
personally, I do believe the carer has a right to consider their own well-being as much as that of the caree, whilst appreciating that sometimes one or other has to come 'first'/take priority in particular circumstances

 

[Rosettastone57]

I think a lot depends on the relationship between carer and PWD and the family dynamics.
OH and I will always put ourselves first when dealing with MIL. We have been married 35 years and during that time we have been abused verbally criticised sneered at ignored lied to and lied about to others. All this because my husband chose to leave home and live his own life leaving his selfish and needy mother on her own. She was 55 at the time.
Other family members have quickly distanced themselves from her and now we have the same behaviour coupled with dementia. We have no one to help us other than the care agency and a few willing volunteers. If we have to put her first we would never have a break. OH works full time and I help in the week to take the pressure off him at weekend. The resentment that pours out of him is palpable.

I make sure she is safe in her own home and well cared for and she has what she is entitled to. But I'm not going to put her above anything else when she can't even bring herself in the last 35 years through jealousy to say my name . I'm usually referred to simply as "that woman "

 

[jennypie]

It's so difficult to get the balance right caring takes its toll day in day out here am I nursing a bad back from the constant physicality of caring - thankfully I've got good friends and an amazing daughter. It's a balancing act and it's a worry tip the wrong way and a crisis can occur - but it's hard to put yourself first as this cared for person is so dependant on you like a child. I know it's in our hands to take all the help out there to ensure we can carry on to do the best we can - if only it were so easy!


Sent from my iPad using Talking Point

 

[Tillyann]

Hi All,

My much-loved grandmother has died but the impact of her dementia on the health and wellbeing of my immediate family continues.

It's so important to put your own health, wellbeing, happiness (and social, work and family life) first as far as physically possible.

I have neglected to look after myself mentally and physically in my attempts to care for my mother. I am now 'listening' to the advise I have been given.
One phrase said to me was ' you can't pour from an empty pot' so true. I'm happy to do it but it has taken it's toll on me.
xxx



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[oilovlam]

Hi All,

My much-loved grandmother has died but the impact of her dementia on the health and wellbeing of my immediate family continues.

It's so important to put your own health, wellbeing, happiness (and social, work and family life) first as far as physically possible.

Lisa, I think it is very sensible thinking....nobody should feel they have to sacrifice their life to dementia. When it impacts on children then I think most rational people would take their interests first.

I decided to look after my mother...nobody forced me. But if I had a family then it wouldn't have been an option. It is a huge commitment. When people say to me "You're so brave", I reply "Not brave, just mad!".

So I think you are 100% correct.

Your other post puts your comments in context. People need to read that before misunderstanding.

 

[Witzend]

I am lucky enough to have two daughters, but having experienced so many years of dementia in both my mother and my FiL, the last thing I would ever want is for them to sacrifice their own lives to care for me.
If anyone's going to have to cope with my dementia, God forbid, and especially with incontinence, let it be a care home, as I have told them often enough, and put in a Living Will, too.

 

[la lucia]

Hi All,

My much-loved grandmother has died but the impact of her dementia on the health and wellbeing of my immediate family continues.

It's so important to put your own health, wellbeing, happiness (and social, work and family life) first as far as physically possible.

Dear Lisa, I just wanted to say how valuable your posts have been to me.

Your openness about the impact of caring on your family, the passionate often divergent responses, the various experiences, feelings, thoughts and motivations of everyone who has participated in the threads, your thoughts as someone who is younger than me.

It's all been so important - both for me to process my own conflicting thoughts and feelings and I believe for others in the future who may be trying to make decisions about care or who are wrestling with their own internal contradictions and families.

For me it's been another aspect of the (also important) discussion we had over in the news and campaigns forum about the 'incompleteness' of the 'living well with dementia' discourse.

After trying to care long distance for my late father and elderly mother, an utterly stressful few years, I faced my mother also being diagnosed with dementia. I asked on the forum 'should I move in with her' and the replies came back ..... no, don't do it. I did, of course but I appreciated the replies.

I believe that with something so momentous, we cannot paper over the cracks, we can't deny the impacts, nor also the moments of satisfaction when we achieve something good or positive even if it's just for a day.

It's always a complex situation, a minefield of learning, a tangle of emotions. There's no right or wrong. We have to find our own paths through this journey of caring for people we often love deeply but can't always manage.

I suspect that you'll revisit these tangled emotions at different times in the future, spiralling around them arriving at different places and perspectives than before.

Then, hopefully, after the difficulties, struggles and repercussions have settled down you'll realise that amongst the pain and hardships the granny you loved so much, bequeathed you something priceless:

A depth of awareness and understanding of life that others sometimes never achieve or take a lifetime to discover. That's the special ingredient that makes people strong and glorious. I hope you treasure that bequest and have the future life that you wish for and deserve.

Very best wishes....