Hi I’m just wanting to share and feel supported on this scary journey.

[Katy Lou22]

My husband’s memory loss has got worse really quickly over the last 6 months. His memory test score decreased by 16 points between June and November. I still love and want to support him but I also need to protect my own mental health because there are days when I just can’t stop crying. People tell me to care for myself, have breaks etc but I don’t know how to do the things I need to do to stay sane without worrying all the time about leaving Pete to his own devices and feeling incredibly guilty.
I’m also wondering whether to book a holiday. We both need something to look forward to but I don’t know how well Pete can cope now in a strange environment and will it just be a cause of stress for him and frustration for me. How do others manage the holiday issue? I would really welcome any advice.

 

[leny connery]

So sorry to read about your sadness and worries. Try book a weekend, short holidays first and see how it goes? In case the break from routine and familiar surroundings are too hard for him to nanage, or to enjoy?

 

[Violet Jane]

Most carers find that they need regular breaks to recharge their batteries and carry on caring. If you are worried about leaving your husband on his own then you need to find someone to look after him for a couple of hours or more at least once a week. This could be a friend or family member, a sitter from a charity such as Age UK or a companionship carer from a professional care agency. Alternatively, he could go to a day centre; most areas have them. You shouldn’t feel guilty about wanting breaks and doing something for yourself. Your life is important too and caring can go on for a long time.

Receiving a diagnosis of dementia is devastating, for the carer as well as the patient, and it’s natural to be upset and fearful. However, if you continue to feel overwhelmed by negative feelings it might be a good idea to see your doctor. There is support but you often have to seek it out. For example, there are Admiral Nurses who are there to support the carers of people with dementia. Many areas have carers centres which are a useful resource for information about benefits and local services.

Before your husband declines any further try to get powers of attorney (there are two types) and a will in place. There are various benefits that he and you could be entitled to. Have you been told about them? Some are not means-tested (i.e. they are payable regardless of the person’s income and assets).

As for holidays, it’s impossible to predict how your husband will cope with a change of environment. I would start small and see how it goes. Perhaps you could start with a weekend not too far from home. Flying has particular challenges - not so much the flight itself but everything else - but you can request assistance at the airport in advance.

Do keep posting for advice and support. There is a wealth of experience on this site and most problems and situations will have been encountered by someone before.

 

[Lawson58]

My husband’s memory loss has got worse really quickly over the last 6 months. His memory test score decreased by 16 points between June and November. I still love and want to support him but I also need to protect my own mental health because there are days when I just can’t stop crying. People tell me to care for myself, have breaks etc but I don’t know how to do the things I need to do to stay sane without worrying all the time about leaving Pete to his own devices and feeling incredibly guilty.
I’m also wondering whether to book a holiday. We both need something to look forward to but I don’t know how well Pete can cope now in a strange environment and will it just be a cause of stress for him and frustration for me. How do others manage the holiday issue? I would really welcome any advice.

You are under a lot of stress so for the moment, I would not consider a holiday or even anything that involves change for a little while.

I think you are starting to grieve for the loss you have already experienced and for what you know will eventually come. So give yourself a little time without adding any extra stresses on your situation. It is perfectly normal to go through this grieving process but you don’t need to add to your problems. You should talk to your GP and hopefully he/she will recommend a program for you, perhaps a mix of antidepressants and some counselling. There is no one answer as your response is unique to you but please get some professional help.

 

[Pat2592]

I can empathise. I tried to book just two nights away (about 40 miles) at a place that’s familiar and we’ve stayed before. My husband agreed until a few days before. he was awake, tossing and turning and told me he just couldn’t do it. I had to cancel and was so disappointed as it’s been over 3 years since we had a holiday.
I too burst into tears at any time, and cry myself to sleep.
Our Memory Cafe has helped which he enjoys and I get a chance to talk to others. I’ve talked to the family to visit more often but we still haven’t had a proper break. Now we have Attendance Allowance I hope to take day trips as we’ve always done things together and eventually book somewhere familiar and local again. We look at it like a team and help each other as he knows it’s hard on me. I do hope you find a way of getting support.
My husband has only just been diagnosed after over a year and has anxiety and worry as well as problems with memory.