Jump to content
  • entries
    768
  • comments
    3,567
  • views
    213,658

sitting on the pity pot

Sign in to follow this  
swilkinson

149 views

I have borrowed one of Sarah's (spacie1) sayings for my title. I have just been chatting with her and I know Gary is so much worse than Ray and yet I was pouring out my troubles to her as if she hasn't got enough of her own without the burden of mine. But I sure need to tell someone exactly how life is for me somedays, without the sugar coating, without the :"I'm fine thanks and how are you?" and without the blank look that comes over a non-caregiver's face when you tell them the trials you face each day looking after someone who is physically and mentally disabled.

 

I am finding it hard to read other people's blogs today. Because I feel so down today I can't get that whining tone out of my voice. Because I feel so down today what other people are going through seems so trivial. Like talking about a hangnail when the person in the next bed is having a leg off.

 

I am just so upset about what is happening in our lives. I have tried so hard to look after Ray and yet we now seem to be at the stage where it is all getting too hard. I am coping yes, I am enjoying life no. I need a break and yet I am afraid of what others will say when I take one. The snide remarks that HE was in care but SHE was out enjoying herself. I know a couple of people that will say that. And they are not part of the crowd observing the day-to-day activity here, but a couple who ring occassionally and tell me what an angel I am to take on such a heavy burden and do such a good job of it. Angels may exist in heaven but the rest of us do the burden of the dirty work here on earth.

 

The first thing I smell of a morning is urine. Ray has a bottle by his side of the bed but is not always good at using it so he has a mat which I wash that the bottle sits on. That is one of my first waking thoughts:"Has Ray gone past the bottle again." This morning he had an "accident" on the way to the toilet. Why do I keep on calling them "accidents" when he does it so frequently? Isn't there some other word I can use? Maybe I can call it a frequent fecal event? He didn't clean it up, he never does, that is my job. Afterwards he doesn't even acknowledge that it happened. It is as if he doesn't acknowledge it then it didn't happen. So when the doctor asks him does this type of event occur frequently he answers:"no". And as it is not in his memory when I answer "yes" he frowns and shakes his head.

 

He has a lot of bad habits now that he didn't have before at least not the the same intensity. The trivial , annoying ones, leaving taps dripping, leaving the milk out on the side, not wiping up spills. It is as if there is someone just waiting somewhere to clean it all up. That mysterious "mother figure" that we all need who will come by and sweep, clean, mop and dust so we have no responsibility to tidy up for ourselves. I know to a certain extent that was there most of Ray's formative years. He always had someone to clean up after him. Now it is beginning to grate on me. I want him to at least attempt to tidy up or acknowledge that there is a problem. Instead of him just walking away.

 

And I could go on and on listing his faults until you were so tired of reading this rant that you were grateful for the little irritations of your own lives. And I realise for some people my rants are trivial in the extreme and what you are coping with as a survivor or caregiver is much worse and I do apologize.

 

Usually after I get this far through the blog I back out and don't publish it. I wonder what you would feel if you could see my raw emotions, my tears of self-pity. But maybe if you tiptoed into the next room you could see Ray laying there asleep, quite oblivious to the turbulent emotions I am feeling. Because even when I yell them at the top of my voice he never acknowledges that he is in any way to blame for how I feel. "What are you so cranky about?" he says. What indeed.

Sign in to follow this  


13 Comments


Recommended Comments

Dearest Sue

 

I am so sorry you are feeling so down. I wish I knew what to say to make you feel better, but you are much better at that than I am! I for one think you are an angel, as are all the care-givers, but I understand you need time out. Don't let "what other people might say" stop you for doing what you think is right for both Ray and YOURSELF. Loads of hugs xxxxx

Share this comment


Link to comment

Sue,

 

 

If I can't be here for you, to listen, understand and support, and you for me, then what are friends for? I can't begin to imagine how very difficult your job is after so many years of doing it and then having things spiral downhill.

 

I've said many times, I fear that we won't see the light at the end of the tunnel until it becomes the final light at the end for one of us. After we chatted last night, I went to bed and tossed and turned for hours, even had chest pains, and wondered if I'd wake up today in a better place, but that didn't happen. So here I am doing the same thing as every day in the past 2 years. Some days easier, most days more difficult. But we have each other to support and care for, so life goes on.

 

When I get to the point of total frustration, I lean on my guardian angels to help carry me through ......most of them are right here on this site and I thank God every day that I can turn here for help.

 

 

Sarah

 

 

Share this comment


Link to comment

Sue,

 

What is so hard about caring for someone with dementia that differs from caring for others is the hopelessness of it. Of knowing that no matter what you do, how hard you try, at best you can only holding back the tide that is eventually going to take the person you've known away and turn them into someone you don't know and who doesn't know you. There are so many of us out here who've been through this and understand what you are feeling, Sue. *beep* those who don't!!! Dealing with dementia is the hardest job in the world. You should never let what other people think stop you from taking breaks when you get the opportunity.

 

 

 

Jean :friends:

Share this comment


Link to comment

Sue:

 

I m sorry you are having such a bad day today, I can't even say I understand frrustration of caregiver, since as a survivor I m at such abetter place than Ray, though I will tell you one thing, stop worrying about what others will say, do what is right for you and Ray. there is saying in Indian cultures that dogs will bark no matter what, you can't live your life based on how others feel and say, My dad died after 9 years f diagnosed with alzeimer, and last 3-4 years were horrible for mom, he had incontinence problem for urine and stool both. It was nightmare for mom, she was doing all that by herself, no help whatsoever, only she would get bunch of relatives telling her to take dad to this doctor or that doctor, she had absolutely gone mad, so one more time do what you needs to do, if you need break you need it, doesn't your kids help in caring, maybe you can ask for share caring with them, or bunch of those friends who calls you angel to help you out

 

Asha

Share this comment


Link to comment

I'm sorry you are feeling down :friends: Don't censor yourself here...this is where you can share and get support from people who get what you are going through.

 

I can't even imagine what you caregivers go through and I have a lot of respect for it. You need to do what is best for you and Ray, no matter what...

Share this comment


Link to comment

Hi Sue,

 

I'm sorry about what you are going through. I totally understand except for the length of time you have had to deal with this. My situation is not even close to yours and I feel nothing but compassion for you.

 

Please don't ever apologize for writing your feelings here. Life is what it is no matter if someone is worse or better off than anyone else.

 

As far as what people say about you taking time off? I say to them *beep* you. They either don't know or obviously have no clue what it's like. And I don't think you are on the pitty potty. You are expressing your feelings in a difficult time.

 

Please take care of YOU and I'll be thinking of you.

 

Cindy

Share this comment


Link to comment

:( Sorry for your sadness, but :Clap-Hands: congrats on all you do as a caregiver, as your job is 24/7 and is many times thankless, but know you are appreciated and am in my prayers

:blush: June

Share this comment


Link to comment

:friends: :friends:

 

 

:hug: :hug: :hug:

 

 

((((((HUG)))))

 

 

 

Thinking of you

Mary

Share this comment


Link to comment

Sue,

 

Ah yes.......the familiar sights, sounds and fragrances we face on an increasing basis. I understand completely your place right now.....and you mine.

 

What to do about that which others may think is a tough one. It's tough because I know where you are. I think I'm healthy enough to understand that my motives are pure and other's judging of my motives is not only inappropriate, it's just plane wrong.

 

The other night I was talking to a friend and she told me she had heard someone give this little tidbit of advice:

 

Don't criticize. . . Don't justify. . . Don't defend.

 

I've really been thinking about that. I think to live by that mantra would be wonderful - and I've really taken it to heart. Mind you, all those "other people" we run into aren't going to necessarily follow my lead. But, it's a way for me to really remember that old saying "to thine own self be true".

 

Another thing people have been saying to me lately is, "where is Ann?" I'll say that to you. Where is Sue? We have become an extention to our beloved husbands because of their illness. Somehow we've become lost as they have become weaker. We really do need and deserve to be Ann and Sue again. Nobody who would judge you for taking the time to regain your strength is worth even a second of your time in thought.

 

Al Anon has a wonderful way of opening each meeting. Although this isn't Al Anon, I want to leave you with this thought because we certainly are a support group for each other. I'll adapt it a bit to our situation:

 

'We who live or have lived with the problem of stroke understand as perhaps few others can.' This is the place we can come no matter our frame of mind and spirit and we will never be looked down upon or judged.

 

Sue, you are a wonderful, worthy woman and it's ok to be frustrated, angry, bewildered or sad. As the doctor told me Sunday, this is in some ways a grieving process.

 

I love you, Twin

 

Annie

Share this comment


Link to comment

Sue,

 

I don't think there is a caregiver here that hasn't felt just like this at one time or another. We all have moments of frustration. I've only been caring for Mike for a year now, only 7 months at home, so I'm a rookie but there are days when I just want to leave the room and scream, and its not always for the same reason. One week it could be one thing that bothers me and then later it could be another and sometimes I'll have quite a few days that I'm fine.

 

You are a very strong person and I really admire you and many other caregivers on this site. I'm lucky to have all of you to look up to and help me through all the trials of caregiving, without you and others here I don't know if I would have realized it was possible to bring Mike home.

 

Take time for yourself, and don't worry what others think, you deserve it.

 

Tina

Share this comment


Link to comment

Sue, what others have said is true; I can't add anything else. As for your problems - here are a few suggestions that you may be able to use as guides and adapt them. I imagine with Ray's attitde, he wouldn't use Pampers. Maybe you can't even purchase them where you are. It certainly would help.'

 

I believe that when he does things, like not cleaning up after himself etc. he doesn't realize that anything is wrong. It probably just seems worse now because there are so many other things.

 

The most important thing is that you get some sort of break. Are there any groups that have days for caregivers to get away? If there aren't, is there any way you could talk church members or rehabilitaion centers into doing something like this. You are so much better able to cope after a break, even if it is only a few hours. As for the so-called friends......well you know what I would say, Some day things even out and they find out that it's a very tough haul.

 

Keep your chin up Sue. We, CG and survivors alike , do know what it's all about and understand.

Share this comment


Link to comment

Sue,

 

I wish I had the words of wisdom to help or to take away your pain. But it seems that no matter how wise the words might be, at the end of the day, they are just words.

 

Please know that I am thinking of you, and I am sending hugs your way. I wish I could do more.

 

Kristen

Share this comment


Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×