Nearly worn out carer

[Tonyh]

Hi everyone,

I feel like a fraud coming on Mumsnet but hope you can help with advice as its usually women who have the caring role in life.
My wife was diagnosed with Alzheimers 5 years ago and it has been an awful experience watching the person I married 50 years ago fade away slowly.
This should be easy for me because in the last15 years I have help my wife look after my mum who had dementia and had to come and live with us and then my sister in law who was Downs who also developed dementia. Over this period I had to cut down working hours to help look after both.
After my sister in law died I began to see signs of memory issues in my wife which have progressed to the point where she is entering the fourth and final stage of the disease.
I hope you don't think this is a hard luck story but I find dealing with the changes in behaviour such as uncontrollable anxiety and repetitively asking the same questions difficult to cope with and wondered if anyone out there has any suggestions for coping with this. The GPs are not interest and there answer to this sort of issue is sedation which I have used occasionally but as condition has got worse there only suggestion the GPs appears to be capable of making is more sedation and a wife who is out for the count most of the day. This I will not do as it is not fair to my wife, a point which a lot of the medical profession seem to have difficulty in grasping.
Any advice gratefully accepted! Thanks a a nearly worn out carer!

[DustyLee123]

Contact Social Care and ask for an assessment

[NutcrackerSweety]

Get help from Social services they can get carers to come in and give you a break, there are also people who are sitters and they can give you a break. Respite care is also available too. Be prepared to push and push, but please get help.

[Neolara]

You can ask for a referral to a psychiatrist who can prescribe meds to help with your wife's anxiety.

[DustyLee123]

Has she been to the memory clinic?

[NoBinturongsHereMate]

I'm not surprised you're nearing burnout, after that run of events

The questions can't be stopped (except by sedation, which is definitely not best practice), but treating the anxiety can sometimes reduce them. It really a job for a specialist, though, rather than the GP - so push for a referral to the memory clinic (who can then refer to psychiatry etc as well if needed).

Contact adult social services for an assessment. Even if you don't qualify for funded care they will be able to put you in touch with various support services.

Ask the GP for a carer's assessment for yourself.

And make sure you get breaks. Day clubs, sitting services respite stay in a care home - whatever works for you, but you need time away.

[determinedtomakethiswork]

It sounds as though you have had and are hopping still a really tough time. From your wife's point of view, I think I would rather be sleeping than going through huge anxiety. could lower doses work?

[Unabletomitigate]

I hope you find so good advice on getting practical help for you both.

One option that you can implement at home is switching to a ketogenic diet (that is very low carb) and also supplementing with pure coconut oil.
One of the issues with dementia and alzheimers is that although the brain wants to use glucose as fuel it cannot, so the brain does not have enough energy to function properly. However patients with dementia can use ketones and medium chain fatty acids as brain fuel.

In practice a keto diet means low carb. But there are also some studies that show that simply adding cocunut oil to the diet can help with dementia symptoms. I add a tea spoon to my two coffees in the morning. This is not a cure by any means, but can in some cases help to manage symptoms.

For the science to back this, try this short video here, and for more info STEM Talks on ketogenic and low carb diets https://www.ihmc.us/stemtalk/episode-59/.

Also, best of luck getting more hands on help for you and your family.

[Tara336]

We had assistance from a social prescriber based at the GP surgery, she was great and acted as a liason between us, the GP and social services. She also put us in touch with Admiral nurses, she was really helpful and knowledgeable. I dont know if all surgeries have them but worth checking she was employed by the council so worth checking out

[ItsAllSoBleak]

I find dealing with the changes in behaviour such as uncontrollable anxiety and repetitively asking the same questions difficult to cope with and wondered if anyone out there has any suggestions for coping with this.

Repetitively asking the same questions is something I found made me more patient by default. You can't keep getting aggravated by it all the time as it drives you crazy. I passed through the wall and then started to see it as a symptom of the disease. It's not her fault she can't remember. Focus on that and expect to be asked again and answer as if it was the first time.

Sedation should be avoided if you can at all costs. If she has Alzheimers has she been seen by a geriatric psychiatrist? If not, speak to your GP about referral because there are things that can help. Eg. Memantine (an Alzheimers drug) can help with aggression and aggitation.

Something I would say from my experience is look at getting a bit of carer assistance now. I didn't until I was on my knees with exhaustion physical and mental. One of the carers said to me that it was very common for family carers of those with dementia to not seek help until they were broken. That's what I did. Don't be me. Her condition will only get worse so you will need help anyway and it will give you a bit of a break.

Finally, be grateful for how she is today because as a degenerative disease it gets worse and worse. You look back to when they could go to the loo alone and shower with your help as a halcyon time because before you know it, you are into pads and bed baths. Everything she can still do for herself today is a blessing. I had counselling and started a gratitude journal - sounds a bit loopy - but writing down four things every day you are grateful for, does, after a while change your mindset.

[maclen]

Her GP should have diagnosed Dementia and a referral to the memory clinic to have this up. Then then should refer you to a care service. My mum is in her final stage of dementia and is bed bound and no longer speaks. She is only 71. Not sure how old your wife is?

[BenjaminBunnyRabbit]

Ring your local council and request a social care assessment. Please tell them you are really struggling to cope and need some help. Be as honest as you can. They will understand. Lots of us are going through it.

Do you claim Attendance Allowance for your wife? If not, she would almost certainly be eligible and this and it's about £70 per week. This can help you to buy in services (i.e. care, cleaning, gardening). Ask for help to claim this. It's a very long form!

It's very important that you get some respite. Day centre, day care or even a couple of hours with a carer to give you a break. Ask for help with this.

Social prescriber is another option but I'd contact the social care team first.

If you tell us roughly where you are we might be able to help with contacts.

Sorry, it's rubbish I know but it sounds like you are doing a wonderful job.

[BenjaminBunnyRabbit]

You might also be eligible for council tax reduction and a blue badge. Again, please ask for help.

All of these things help and you can put the savings towards buying in some care to give you a little break.