Hi to you all. My husband was diagnosed around 6 months ago after an MRI and PET scan. We were so looking forward to these years and then to hear this has been devastating. At the moment it’s mostly the memory problems and we’re taking a day at a time and supporting each other. I can’t bear to think what’s going through his head and I’m trying to put on a brave face but I’m so scared of losing the person he is to this horrible disease. We’ve been through so much together and have a lovely family but I’m struggling and frightened that I won’t be able to cope and am bottling up these feelings as I don’t want them worrying. He’s been prescribed Galantamine but is reluctant to take them as he is worried about side effects. I’m sorry to sound sorry for myself but can’t bring myself to open up to anyone and feel at breaking point inside. I keep hoping there’s been some awful mistake.
In denial about my husbands diagnosis
- Thread starter Rocket3
- Start date
Hi @Rocket3
Welcome to the forum. Lots of empathetic people to offer their views and experiences, and a wealth of info on the AS website for you to explore.
Yes, a formal diagnosis really brings it home and is shocking even if you suspected as much from your OH's behaviour changes over the past year or two.
The only way to get some peace is to be able to accept the position. Yes, we all have experienced anger, regret, resentment, loss, frustration, fear, stress, lack of sleep, worry etc - normal in these terrible circumstances, and yes, sorry for oneself.
If it's any consolation, you know you are not alone. One has to be able to get on with life in this new chapter, as best as one can. I've only been caring for my OH for 6 years and its likely to go on for quite a while yet.
You have to be able to look after yourself, to be well enough mentally and physically, to continue to care for your OH, now in his hours of need. You need to grab the odd 30 mins here and there to have some mind space for yourself as a break.
You can, if you feel the need, ask the LA ASS for a care assessment to see what help, if any, your OH needs; and a carer's assessment to see what help you need.
Have you applied for Attendance Allowance? a LA Blue Badge? the allowable discount for council tax? registered with your gas and electricity and water supplier that your OH is a vulnerable person so services shouldn't be cut off?
If you haven't already, sort out LPoAs for your OH and for yourself. Do you both need to update your Wills.
A person recently diagnosed with dementia of any kind usually still has mental capacity to enter into these legal documents, but mental capacity will at some point be lost, when the legal stuff can't then be done, and a Court of Protection Deputyship may be needed.
A lot to sort out. If you feel you need help, then seek it.
Best wishes to you and a vitual hug.
@Rocket3 Welcome to Talking Point from me also. A diagnosis of dementia always comes as a shock even if we are half expecting it and it takes time to get used to.
@Chizz has given you some good advice on some of the practical things to think about, my advice would be to take them one at a time with the LPA being the most important.
Please don’t bottle up how you feel, let your family know so that they can help you. And try not to worry, take each day as it comes, everyone’s journey will be different.
Please also encourage your husband to take any prescribed medication, they cannot cure but can help with symptoms.
Finally take a look around the site and perhaps start a thread on the ‘I have a partner with dementia’ area. There you can post regular updates about how you feel or ask for advice. You will always find someone willing to help you.
@Chizz has given you some good advice on some of the practical things to think about, my advice would be to take them one at a time with the LPA being the most important.
Please don’t bottle up how you feel, let your family know so that they can help you. And try not to worry, take each day as it comes, everyone’s journey will be different.
Please also encourage your husband to take any prescribed medication, they cannot cure but can help with symptoms.
Finally take a look around the site and perhaps start a thread on the ‘I have a partner with dementia’ area. There you can post regular updates about how you feel or ask for advice. You will always find someone willing to help you.
