Frightened or Gut-less?

[Jannie]

I have to write to you at the moment because I'm really on a low. I am suffering with this horrid cold/flu lurgy and so I suppose that is not helping. When I look at so many of the posts written here I really admire how other people seem to deal with things. I feel so pathetically hopeless and selfish in that I know that I should be visiting my Mum more often and supporting her, but I don't do it. The bottom line is that I am scared. I do not want this to happen to my Mum. I do not want to accept it. Yet it must be pure selfishness on my part that I choose not to face her. I make excuses for reasons for not being able to visit. How awful. she would never have treated me like that. Yet because I am struggling with things in my own life at the moment I really am worried that I just won't be able to cope. Then if I don't cope, who will look after my children? I have to keep going for them, but selfishly I am making my Mum suffer in the process.
If anyone out there has had any similar feelings, please let me know because I really need to learn how to deal with this as I know that it is not going to go away.
Thank you for listening

 

[daughter]

Just human

Hi Jannie,

I think I can safely say that I have similar feelings!

"I know that I should be visiting my Mum more often and supporting her" - yes I sometimes feel that way but then I realise that I have my life to lead too, other committments etc. Some people can dedicate their lives to caring for their parents - I can't. If that makes me a bad person, so be it. I just try my best, try to balance all the bits - and hopefully know my limits.

"I am scared" - yes, it would be more unusual if you weren't, especially at the start when all of the 'unknowns' are ahead.

"she would never have treated me like that" - may be not, but she's your Mum and isn't that a bit different? I wouldn't expect my children to drop everything and suddenly become super-human caring machines just for me. They have their lives to lead too, other committments etc. (deja vu?!)

When I read some of the posts on TP, I also admire how other people seem to deal with things - and I start to think that perhaps I'm not doing enough / feeling enough / understanding enough, but I am who I am, and I know my parents love(d) me for that.

I try to think that I may not be doing as much as I could but at least I'm doing what I can cope with, without feeling overwhelmed by it all.

The flu doesn't help of course, I hope you're feeling better soon.

 

[Michael E]

It seems to me that all of us who 'post' on this forum are doing what we do because we actually want to - need to???.

That is not to say I do not get depressed, angry, feel I have failed or what ever but deep, deep down I really want to do this - care - what ever it may be called for my wife.

When my father was in the condition of your mum - I hated the visits and if there was a good reason not to make the journey = I took the escape. With my wife I feel very different - loved my dad but I really owe my wife and really want to do this... Could not imagine not doing it but then the future holds all sort of nasties and maybe that will change - hope not but it may.

I think all of our first loyalties lay with making sure that the immediate family - the people who depend on us do not loose out because we are giving too much to a relative with AD.

I actually believe that if you feel you do not want to do this 'caring' bit then you should run a mile. It breaks me up when I see the posts of people here whose husband or wife has AD and they have kids, a mortgage and are young - when it is that situation there really is no escape. I think when its mums and dads - if you really want to care - visit, whatever, then do it - but if you really do not feel that, then that's fine as well - no point in two or three or more lives going down the pan when the person with AD probably does not remember your visit or possibly even who you are... We only live once - and this is not a rehearsal...

PS I would not expect my kids to visit me much if I was alone and had this dreadful sickness - and frankly I suspect I wouldn't care - Age is a wonderful thing - it sort of sets you up for a very short future.

 

[Brucie]

Everyone else has said it, really.

I'll just add one point [never a short point with me... ].

I'm visiting Jan usually six days a week at present. It took a lot to drop to that from daily, and previously a lot to drop from 2 hours per visit to an hour.

I'm aware that this will be a long haul operation for us. Yesterday was Jan's annual review and the doctor said that, although her condition requires the same high levels of care as last year, she is clearly still a young woman, with strong organs - heart etc. She enjoys her food and eats massively and has put on a couple of kilos the past month or six weeks.

In other words, she will go on for a long time yet. So saying, the 15 years along the trail so far could go on for another 8-10 years. That will be a quarter of a century in thrall to dementia! Unbelievable.

There is clearly a likelihood of Jan reaching a stage where she will become immobile and will be unable to display any ... well, conscious awareness.....life.

I know of one person at her home who has been in that state for ages already. Her husband [in his eighties] still visits her each day, and I can't see myself being able to do the same.

In that situation I would expect to curtail my visiting, to what extent I don't know. At present I drive 12,500 miles each year just to and from seeing Jan. In the expectation of my needing to limit my visits - well, that is why I am making sure that she has the best of my presence now while I feel she can have any recognition of my being there.

We're all just human, after all.

 

[EllieS]

Can I be honest with you.

I can understand your fears and of course you must do what is right for you and your own children BUT if your Mum is still able to recognise you and greet you with a smile it would probably do your heart good to visit may be once a fortnight/month. If her memory is poor, she'will forget but if you do visit sometimes even if only for the time you are there you will give her some happiness.

It will be heartbreaking to leave her but you could perhaps make yourself remember only the gladness you saw in her.

You should not feel guilty at all though whatever you do because your Mum wouldn't want that for you. Anyway, it seems that no matter how little or how much we all do, we all feel guilty that it's not enough anyway!

You very obviously love and care about your Mum - otherwise you would not have visited this forum.

I sometimes wish I could be like someone close to me and simply not give a hoot.
But we're all different and we all have the right to live our own lives. It's just easier to say than do though!

Ellie

 

[jc141265]

Jannie,

I've said it before and I'll say it again even though it is not true for everyone it is true for me I believe. The amount I am able to commit to Dad is due to the relationship I had with him. He wasn't just a good dad he was my mentor, he was the person who made me strong, he was the person who when the rest of the world said to me 'your worthless' kept me up and able to see that if I kept just doing what I believed was right, who gave a damn about what everyone else thought. During a period when he was suicidal, I wrote him a message in a card and read it to him, because he was no longer able to read and comprehend. It said something a long the lines of 'Dad you are the best Dad in the world, you have made me what I am today so don't feel down about the things you can no longer do, because every day you live through me, what I do is because of you, the things I acheive is because of you, you just being there makes me better every day. Thank-you Dad for being so amazing.'

This is why I can visit Dad, 6 out of 7 days, he was once my life saver and I am now his. For my brother and sister though, they never really had that kind of a connection. They love him and he loves them, but he didn't define them like he did me. I know that they probably suffer more than me in this situation because they suffer the guilt of not wanting to be there for him, wanting to get on with their lives. So think about that you are not necessarily suffering less then these wonderful people you see on here, you may in fact be suffering more, it may actually be harder for you. As Michael said, we do this because we want to. I'm not saying that I wish sometimes that it could all end and I dread the fact that it could go on and on. But I feel I owe my Dad that, not just because of the father daughter relationship we had but because I owe who I am to him. I don't think that ours is a normal father daughter relationship, we were like kindred spirits.

Something else to ponder on also is that even us who appear to do so much suffer the guilt. I often sit there and think 'oh poor me, giving up an hour or so everyday' but then I think 'sheesh, you give a whole hour while poor Dad is left alone for the rest of the day in this boring hell hole with no other light in his life'. Oh and the guilt I feel when I miss a day! One way i look at it is, that health experts say that we should devote 30minutes to exercise everyday or if not that much, 30 minutes 3 days a week. I've never been able to find that amount for time, and yet here I am now finding an hour everyday?! When this is all over, I am going to be the fittest person around, because I am never going to be able to use that excuse anymore! Its amazing what you can fit into your life when you decide its what you want!

 

[KarenC]

My husband's aunt (now deceased) said, about visiting her mother in a nursing home: you visit when the guilt of not going to see them gets worse than the going to see them.

Karen

 

[Jannie]

Thank you

Just to say thank you for your warm and honest replies. I will refer back to them as they give me support, understanding and strength.
(I have just returned from the doctors and been given some antibiotics so hopefully this horrid lurgy will disappear - at least I feel reassured I wasn't making an unnecessary fuss!!)
Jannie

 

[Lynne]

Jannie, be kind to yourself

"If anyone out there has had any similar feelings, please let me know because I really need to learn how to deal with this as I know that it is not going to go away."

Sweetheart, "anyone?" Just ALL of us, that's all. Whether our loved one is still at home with us, or needs the specialist care of a residential home, or respite care ... We're all scared, horrified, frustrated, tearful, guilty,guilty,guilty, angry, resentful and hating this awful living-death sentence. If they are in residential care, it's because they need to be there, for their own safety and for the sort of care you & I can't provide. We all feel we can never do enough, even those who have got everything possible in place & working out (eg Bruce), BUT most of us have other family members who still love us and need us, just for who we are, not necessarily in any practical sense, like children. And we need THEM, partly for emotional support in this situation but also for just who THEY are, just to remind ourselves that there is a 'normal' world out there at the end of the day.

You have to try sometimes to remember that you are someone special, not 'only' a carer/daughter (son/spouse/whatever) of an AD-sufferer. Whilst it might take over your life for a time, you will still be you, and your family will still love & need you, after this is over. You still deserve a life and happiness, and your Mum would be the first to say so. And yes, "over" means our loved one will be dead, but I hope I will be able to see that as my Mum's release from torment.

It's difficult to know how to say this without fear of offending or being misconstrued, but in the animal world something which has lost the plot, big time, just doesn't survive to live out a long, sad decline. If I wilfully kept alive a pet in such circumstances, I would probably be prosecuted & castigated for cruelty. I am NOT advocating euthanasia (although I would want it for myself) but this living death seems the most unjust and cruellest end of all. Surely we are all doing our grieving right now, with interest.

If I dare suggest some advice, make a list of the component parts of why you feel unable to cope. What parts of that list, if any, can you or should you get outside help with. Are you trying to "do it all" in an attempt to get rid of the guilt feeling. It won't get rid of it, nothing gets rid of it (from what I read on this and other boards) because none of us can work the miracle which would turn back the clock. And this awful disease can be a long-haul situation (15 years & counting, in Bruce & Jan's case). That's not something I can quite grasp yet, or don't want to, but life is going to be difficult enough without beating myself up over the things I can't manage to do, even when I know I'm doing my best.

I certainly can't help you learn how to deal with it all, because I don't know myself yet - and my Mum is only just at the start of this slippery slope. But I do know that if I let the demon guilt-monster take over my mind, I'll be no use to anyone.

I hope you feel better soon. Not just the 'flu, but the depression. I hope you and your GP are looking after YOU as well as your Mum. You owe it to yourself & your family to do so, and it's what your Mum would tell you to, if she were able. As you said yourself, "if I don't cope, who will look after my children?"

Also (which is what I originally intended to say in the first place, before I got carried away) I think a lot of people come here with their "brave face" on, so as to engender a supportive tone to the board generally. I'm sure there are a lot of tears and anger etc. etc. which don't get expressed.

God bless

 

[blue sea]

Jannie

I fully agree with everything everyone has posted in this thread. I haven't solved this problem (I can't imagine anyone has!) but I have found the following helpful. I always do something practical when I visit - checking the state of clothes, filling up the biscuit tin etc. I find these little rituals make the visit easier and help keep some of the emotions at bay. I also keep the visits short, unless dad is particularly responsive. Sometimes I do a 40 minute round trip and only stay 10 minutes. That is how I cope. Occasionally I'm taken by surprise by a good visit when dad and I seem to relate again in a comforting way and then I stay longer.

Sometimes when I can't face a visit I just ring the home to ask after him. I also found it helpful to decide on a pattern of visiting within a minimum and maximum -for me that's 1 - 3 times a week, but if we want to go on holiday or I feel I need a break from visiting for a while I take it. I know the home will ring me if there's a problem. I think you have to pace yourself - as Bruce and others point out, the situaltion can go on for years. It's not like visiting someone in hospital for a few days.

Even you feel you can't visit at all try not to worry or feel guilty. You may feel differently in a few weeks time but if not, you are still doing your best for your mum by looking after the rest of your family and yourself. She would understand this and not want you to feel guilty. Visiting loved ones with dementia is heartbreaking at times, frequently upsetting and always sad. It's little wonder we all find it hard. You're not alone in how you feel, so be kind to yourself. One of the few comforts I have when I don't visit is that I know dad does not 'miss' me as his short term memory is so poor. I know how great my love is for him, as yours is for your mum. They 'know' that too. Not visiting can be an essential survival strategy at times.

I think everyone who posts on here is a hero in their own way - for loving, for caring, for feeling guilty, for being human and honest. For wanting to do our best but realising that 'our best' will often seem to be not enough. For having to accept that however great our love we can't stop this dreadful, inexorable decline of our loved ones.

Blue sea