Timely reminders

Hi folks, well Julie is definitely on the mend, she is not needing as much support these days, which is one of the reasons for the title of this piece.

As a carer you have to find the dividing line between caring and controlling, in this instance I have been used to helping Julie with everyday things such as moving around (using a wheelchair), washing, dressing etc. Now that she is improving I have to know when to back off until she actually needs my help, rather than jumping in with both feet.

The next thing is communication, now as all us blokes know this is not easy as women have selective hearing (kidding no threats please girls). Joking aside this is very important, more so when the person you are caring for has other issues, such as my Julie who has early onset dementia. Now this is in very early stages and since breaking her ankle it does not seem as bad, as she has come out a stronger person. However, there are still times when she may ask two or three times in a day, “when is that appointment”? You just have to take each day as it comes.

Patience also goes along with communication as you may say something which is forgotten hours or minutes later. Do not get angry (frustrated is okay, but let it out in another room) just because you know you have told them, even without dementia, Lupus brain fog can be just as bad.

Making and keeping appointments, now this seems easy until you have them everyday of the week, go back to what I said above and you can see how this could lead to frustration. It is up to you as the carer to maintain a diary/calendar for these things. Don’t be tempted to buy them a pretty diary and say “here, now you can keep track” it doesn’t work like that. An example could be as follows, your partner is suffering from brain fog and they have the following appointments; daily trips to the doctor as they are on warfarin and their INR is all over the place, there is also that dental appointment, a trip to the Rheumatologist, an xray, hair appointment (don’t laugh this is VERY important) and then are all the prescriptions in date, if not don’t forget on one of your trips to the doctor to get them replaced, then don’t forget to pick up what is needed. So do you expect your brain fogged partner to remember all of this, extreme as it is, it can happen like this.

Oh and don’t forget to keep fit and healthy yourself.

Sounds daunting, but once you are organised it gets easier and you don’t notice you are doing it. However, don’t become tied to this support you need to have balance, get a hobby, make time for lunch dates or just going for a drive, you will both benefit, just be aware that they may go to bed when they get back. This is normal.

When all is said and done, you do all of this because you love them.

One thought on “Timely reminders

  1. The reality of Lupus for carers and their loved one.Wow Eddie, what a realistic,sensitive and loving portrayal , yet hopeful. I hope your blog is widely read. Thanks.


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