Real stories

Mum's eating problems got worse as her dementia progressed

Thank you so much for sharing your story. My dad was diagnosed in February and eating has become an issue he also has dysphasia which is an added complication. He often goes through phases of throwing away food, he also eats pretty much non stop throughout the day but gets quite frustrated when it’s dinner time, he loves anything sweet which is strange as he never did before. I too am beginning to realise this is my new normal. Keep strong everyone.

I have found this very helpful, to know there are others out there like me, my mum was not eating properly and her fridge was filled with chocolate and many out of date things, she loves shopping but would only buy chocolate and cakes, I came home from holiday last year and found she had switched off the freezer, everything had to be thrown, I have now got this under control, I bought these little caps off of the Internet that fix over the switches, she is living with me at the moment due to a knee op, she insists on washing up, which I let her do but have to sneak back in the kitchen and wash it all again as she doesn't do it properly, its very sad as I see her daily loosing her ability to do things, she doesn't know the value of money and can't go on a bus on her own anymore

Is it OK that my father in law eats 24/7? He doesn't gain weight, he just eats constantly. He eats a healthy breakfast at a cafe, then back to the cafe for coffee and cinnamon toast, and then a healthy lunch. He will not eat dinner, even if it's something really good. He eats bite sized carrots, mini oranges and mini apples all day long. As soon as he gets back from the cafe, he's in the fridge looking for carrots. He also wakes up all night long to eat carrots and smoke cigarettes. We asked him today if he realized that he is constantly eating, and he said that he didn't. He is so bored all the time. My husband and I live with him and take care of him. But he never wants to do anything at all. He says that he's bored, but he doesn't want to play games or go anywhere. He wants to go home the minute we go anywhere. Most of the things I read about dementia is that they forget to eat. But this is not our problem and I'm concerned. Is this normal?!!!

I work as a carer and I found this blog really useful as it helps you see it from the family's perspective. One of my clients is having problems with eating now. She used to feed herself, but just leaves the plate unattended now. Even when I assist to feed her, she will "store" the food in her mouth. I encourage her to drink fluids, but even that is becoming challenging now. I cannot ask her what she wants as her verbal skills have gone. It is terribly sad for her and her family, but as a fellow human being I feel a great sadness for her also. It does help to share experiences and there definitely needs to be a bigger budget for health and social care. It really is disgusting that services are difficult to access.

I'm at the first stages of this, I'm currently sat with my mum after making her soup, as it turns out she'd forgotten to eat. This is a new development and means I will need to bring carers in for meal provision.
The medication she's on seems to be a hit and miss affair, no matter how many notes I leave, sorted into pill boxes so that something else try and sort out.
I'm glad I found this place because I've felt very alone and nobody really tells you how you should deal with this, you learn as things happen.

My mum was diagnosed shortly after her 90th birthday, some present to get! Because I live with her for quite some time her decline has been more noticeable to others but, not to me. However in the last few weeks her decline has become for pronounced combined with a sort of withdrawal from the world. The hard reality is that all she wants to do is eat & sleep on a normal day. All her usual activities such as crosswords etc have become alien to her, despite attempts to the contrary.

I had no idea that others were going through the exact same thing. I have been caring for my mom for over 5 years and I've been watching her slowly dissenegrate. Some things she does make me laugh, some make me cry. I had wanted to keep her out of facilities thinking I could care for her until the end. She is at a point where she won't swallow, wanders off and has turned combative. She is up all hours since daylight and dark mean nothing to her. Even though I should be proud how long I kept her, I still feel that I've let her down by placing her in a facility at this point .

Always helpful to read someone's else's ideas and experiences. Caring after mr 85 year old father who has dementia and early stage Parkinson's. Everyday is a battle but knowing you are not the only one provides some sollace. I agree with the social services comment. Regrettably it is all about money!!!!

It helps to know I am not alone. Mum cannot understand why carers are necessary. Getting her to take meds is quite often a battle and quite often not taken because she just won't take them.

Thankyou Lucy - mum is 74 & in late stages , it’s excruciating to watch and I only hope mum is too poorly to care. She’s gone from a beautiful social independent woman to a frail old lady ! I miss her voice & our cake & cappuccino days ! Keep spending as much time as possible with her - you will thank yourself for it one day! X

I am so grateful for your openness and honesty. I've just come back from yet another hospital admission. This helps me realise what my "new normal" looks like. Thank you. Thank you.

I experienced Alzheimer's with my mam and dementia with mum in law. These are terrible illnesses which rob people of their life slowly as you watch them. They seem to shrink before your eyes. It's also more difficult to get help from Social Services than it used to be just when you really need it. I don't know how the government can lie about what they want to do to help mental illness etc.

I hope by sharing this-it will help some others in the same situation to cope and realise they are not alone.