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Why is being a carer so hard - Page 2 - Carers UK Forum

Why is being a carer so hard

For issues specific to caring for someone with dementia.
Apologies, Tonytrucks, for getting your name wrong.

I’ve been getting names wrong ever since I joined this forum less than a month ago.
I called Bowlingbun Bowlingbum at one point, and I’ve only recently realised Dancingintherain is actually called Dancedintherain. And I only realised that because another postee wanted to know why he/she had stopped dancing in the rain? That puzzled me, took a closer look at the name, and realised my mistake.
Another name I kept spelling wrong was Tristesta. In the end I just added it to the Forums spell checker’s dictionary.
I think I got her name mixed up with yours, they’re kind of similar with all the ‘T’s.
Just be greatful I called you Tonytress instead of Tonytruss! Now that would have been embarrassing.

Regarding contacting Ensure, etc, I’ve already drafted my emails to them. Whenever I contact big companies, MP's, etc, I like to let rip on my initial draft; getting stuff out my system if you will. Then I leave them alone for a couple of days, and come back to them with fresh eyes. Then I ruthlessly, and critically, edit them, as follows.

“That’s irrelevant, that can go…. Better note call Scottish Power a bunch of thieving corporate carpet baggers, don’t want to alienate them too much…I’ve repeated myself there, that can go…. That’s a bit confusing, better re-word that…” etc, etc, etc.

This way I can reduce several pages of impassioned verbiage to a page or two of something that someone might actually read, take note of, and hopefully act upon.

Might it help to reduce the impact of sugar spikes if these Nutrisips were to be diluted 50/50 with water? I don’t mean to cut her dosage in half. If she’s been prescribed 3 a day, then for her to still take 3 a day, but at twice the bulked out quantity, spread out throughout the day, sipped more frequently. Just an idea.

I had to do something similar for my mum. Not because she was diabetic but because she loathed those Ensure drinks, calling them slimy muck. I diluted them 50/50 with semi-skimmed milk, added a few drops of vanilla essence, and she was much happier with them.
Might be an idea to check with a nutritionist first though. If you go to the Nutrisip website, they have a ‘Ask a nutritionist’ bit, where you can type in your question, and they’ll get back to you almost immediately.

Hi, Dancedintherain, thanks for the compliment, chuck.
Much appreciate it, but if I’m honest, I’m doing all this stuff on the forum for entirely selfish reasons, not out of the goodness of my heart.
Caring has its awful and wonderful moments, but they’re only moments. 90% of the time nothing happens, but I still have to be there for that 10%, which never has the good grace to book ahead for an appointment.
I was beginning to die from boredom, beginning to resent mum like hell, and I seriously think I was well on the way towards clinical depression. Not a pretty confession, but that’s the truth.
Now though, with the help of my laptop, Gethsemane, via the forum, I can now finally exercise my mind, if not my body, indulge my campaigning nature, and let my imagination run riot on my Amrak thread; all without compromising my caring duties towards mum. What more could a girl ask for? There’s only so much day-time TV a soul can take before spirit sickness sets in. Now I’m happily battering away at Gethsemane, keeping mum company and an eye out for her, whist she merrily watches The Weakest link. She’s currently yelling out the answers she knows.
I’ll take her out in the garden when it’s over, using her wheelie commode, so she can supervise me planting the bulbs sitting down, like a queen on her throne issuing orders to her underlings.
Chow for now.


P.S. Thanks for info about Carers UK link with Nutrica; I hadn't got a clue till you told me.
What a bummer! Glorious sunshine until 2 minutes after The Weakest Link ends, then immediately it clouded over and started spiting with rain.
So, mum's dozing now instead, and I had an idea; What about Complan? Maybe that's better for diabetics than Fortisips?

Looked them up, and copied this from their FAQ bit of website.

I have diabetes, can I drink Complan?

Diabetes is a complex condition, and not everyone will have the same nutritional needs. It’s therefore best to talk to your dietitian or doctor before you take Complan – take the Complan nutritional information with you so that you can discuss the nutritional content together.

Back to square one again. And get this, Complan are owned by same company who owns Fortisips! I wouldn't be at all surprised if Nutrica also owns Ensure. I'm going to look that up now, before doing some housework.
WOW thanx for your replys folks its a bit overwhelming,to reply to some of your comments yes i have had a carers assessment and my wife has had a needs assessment as well, but the problem i have with getting respite is that after the trauma of being arrested and detained and my wife being locked up and seperated from me just because of the incompetence and lies told by the staff at the mind centre the false accusation of rape has almost pushed me over the edge,i did nothing wrong but they branded me a rapist when they didnt even know me and now i have to live with this every day,i am always looking over my shoulder in case it happens again,everytime i have to do something for her i worry in case its wrong although i know im only doing my best and i love her dearly,it gets at me in my sleep ( when i manage to get some sleep) and i still ask myself why they did this,i often have to go out for a walk at night to try to get it off my mind but it will always haunt me and the anger and frustration i have for them words cannot describe,the only time i ever asked for help and they walk all over us it just isnt right.
Dear Tonytucks

I’m no expert, but it sounds to me that this rape accusation has, not surprisingly, badly traumatised you. It’s possible that if a fellow forum member has experienced something similar, and has read your posts, they may have already sent you a Pivate Message, or you may receive one in the near future.
I was on this site for about 3 or 4 days before I even realised they existed, and thenfound out I’d received one two days earlier.

To check if you have, log in, and towards the top left hand side of page you’ll see (x new messages)
Even if it say (0 new messages) still click on it. Mine said 0 messages, even though I had one.

Alternatively, you could describe your awful experience in detail (just writing about it may help even if you didn’t post it) and I’m sure loads of members will respond with loads of dead helpful stuff for you.
If you wish to do this, I’d suggest composing your ordeal in Word, or Wordpad, rather than on the forum direct. This way you can do it in your own time, at your own pace, until you are happy with it, without the rigmarole of having to go on the forum and logging on, plus risk losing what you’ve worked on coz the site mysteriously logs you out. That’s happened to me too many times now, so I’m currently writing this reply to you in Word.
When I’ve finished, I’ll copy and paste it onto your thread. If I balls it up, I’ll just repeat the process till I succeed.

Alternative to that, you can PM me if you like. I can’t promise I’ll be much use to you, but I can promise 100% confidentiality.

Whatever you do, you’ve got to do something. This issue isn’t just bugging you, it’s tearing you apart.

Best regards

Sajehar xxx (for both you and your wife.)
My husband has dementia & Parkinsons and as he is not so good at standing & walking now cannot go to the day centres he was going to so carers are now coming in during the day now as well as morning and night. He doesn't communicate and so knowing about hungry or thirsty is one thing but knowing about pain is another. These stages we are in now have been since last November and lately I find the caring role is changing from day to day. In the last few days he has taken to working his way so far forward on his armchair that he is falling onto the floor. There are people I can call on to help get him up but at times you feel you are being a pest.
I am not getting out as I could when he went to the day centres but am seeing more people in the house. The carers are very good and try to walk him around the house which is quite small as well as changing his pads. I feel if I let him go into a home he would feel I was betraying him for all the years we have been together (57) and in a home he would not get the individual attention he gets here.
I see from all the replies you have received we all agree you can put all the adjectives you like into replies which describe how hard caring is.
I am sorry you haven't found the help you need yet but keep trying.
Daffy,on a personal view caring for my wife is not so hard its the idiots who call themselves professionals,the so called 'caring organizations' and nhs staff that make caring so hard i could think of a few 'adjectives' to post about them but i prob. would be barred from the site,also what has happened about the promises the government made to improve help for carers? They definetly qualify for the BS award of the decade.
My husband has picks disease or frontal temporal dementia. I feel that I have lost him and now live with a stranger. This is the most difficult thing I have ever done! I feel I am living in a nightmare. Thats why it's hard. We have the grief of losing our loved one and the roller coaster of emotions that brings, and the pain of seeing them every day getting worse. How good it is to know I am not alone, on the other hand how bad it is that anyone should feel how we, as carers do.
Hi SussexRokx

Thanks for that. It's hard to remember that.he used to travel from one end of the country to the other. He trained people how to handle difficult situations, ran team building exercises and loved every minute of it . This morning he came downstairs , face covered in shaving foam. He had gone to clean his teeth but couldn't remember what to do.
I had to explain what cleaning his teeth was. That's what makes caring so hard. I don't know about anyone else but it's the rush of different emotions and great great sorrow that leaves a knot permanently in your stomach.It affects your own health to the point that you become exhausted but can't sleep. Does anyone else feel this way too? Ttfn
daffy, if your husband falls it's OK to dial 999 and ask the ambulance staff to help you. If you damage your back you'll be no good to him!
A very traumatic experience. You really have to ask help for someone who is an expert in that kind of field just like for example an assistance from dementia specialists. They can give you the best advice and just stay strong in order for you to sustain the daily needs. I hope this advice will help you.