Being prepared?

[Kathrin87]

Hi everyone, i was wondering if the caregivers or family member of dementia patients could share their experience with me, at the moment i'm texting , i'm so broken and disappointed as my mother is battling with dementia ,she's in last stage of Alzheimer (Doctors say she has the common symptoms of alzheimer and parkinson ,some say maybe lewy body ....) we've been in and out of hospital for last 5 month , once she got aspiration during her asleep in the night, so she started to live with PEG(feeding tube) after handling the troubles of adopting with it(such as second surgery for new PEG and stuffs like this) 3weeks ago she fell down of coach's of the house which was 20 cm hight right when we wanted to lift her by lift truck, ,so she admitted the ICU for 19 days and now she's having Tracheostomy

we live in Iran, we're not having any professional help in the country, let's say we have one of the worst health care system here, and now i'm wondering how long she has left to go , once the Nurse and the pulmonologist told us prepare your self for her death, we're passing such stressed out situation ,does any one know something about situation?

what should i do? how can i help her

is she really living us this early? 😢

she's 68 , she had more to live and now...

[Hidden]

Hi Kathrin87,

I'm so sorry to hear of your mum's diagnosis at such a relatively early age. Dementia, including Alzheimer's is a cruel condition that robs us of the ones we love little by little and it is heartbreaking, I see you had posted on this community several years ago and now understand that your mum is reaching the end stage of the disease.

All I can tell you about how long, is that, sadly, as you have now been told to prepare for her passing, it is probably better to accept that it may be soon. There is no scale for predicting exactly when it may happen, but those medical professionals who are involved in her care, are the people who will see the signs that it may now not be long.

I understand how desperate you may feel and that you would hope there would be something that might keep her with you for longer, but I do think you have to mentally prepare for her passing, as best you can.

Care in the final stages is around keeping your mum comfortable, and I'd say not to allow too many interventions to try to prolong her life, sad though that sounds. There is no coming back from this. In the meantime, just try to be with your mum as much as you possibly can. Try to calm her and reassure her in moments of cognition. Find the things that make her less agitated and afraid. (Sometimes this can be through touch and sometimes that is rejected, so just watch her reactions and decide for yourself what works best for her).

There really aren't the words which can comfort you. It's a horrible and distressing time and I deeply feel for you. My sister died from this and my brother-in-law is now suffering from the same thing. All I can tell you is that at some level within, your mum will know that she is loved and that's the greatest thing we have which can help our loved ones to have a dignified passing.

Wishing you strength and sympathy at this really difficult time.

[Kathrin87 in reply to Hidden]

thank you for your reassurance and all of the nice things you shared with me, the only people who can understand me are those who are experiencing such hard times in their life, and the advice you gave me about comforting her, i still can see the reactions on her face if she's satisfied or in pain, she can't express her pain as the tracheostomy locked her voice

i feel sorry for your loss as well, May your sister live in peace

i call Dementia, The disease of nice people, and my mom is one of those nice of them