Alzheimer`s Disease/My Mom Case

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Question
Hi Mary,

I really feel guilty. My mom is AD patient since 4 years, we discover it since 3 years and the disease is really developing. Why am i guilty? Because sometimes i wish she dies and rest as i really give up. I am working and taking care of her with my father who is old, i end up having no life, and i can not even sleep ( as she is awake during nights and sleep during days).

she is really weak now, she is eating and drinking very little with hand feeding, she is still talking but with nonsense most of the time. She is complaining of difficulties in breathing sometimes. she is 76 years old..

I am in a country where hospitals are shit and no day care or any type of good nursing.

I really need your advises and support.

Thanks,
Amr

Answer
Hi Amr, I do understand how you feel. My husband was an only child and he loved and honored his mother very much. and she was a very fine woman. However, when her dementia got really bad, he know she was living out her worst nightmare - her own mother had lingered after a terrible stroke. The one thing she had feared most had come true - being caught between life and death in a kind of twilight existence. She was unable to enjoy any quality of life or even know her own family, and yet her body lived on. My husband wished there was a way to free her and felt terrible for even having the thought.

When you start to pray for a loved one to die, of course you feel guilty - but you have to recognize, it is not praying for the person they once were to die. That person is already gone. What is left is but a shadow of who they were, and it is torture. You are praying for them to be free from the living hell that their existence is becoming. I know if you could restore her to health, you would do anything you could, but that cannot happen, and you know what lies ahead for them is even worse than the present. You would have to be made of stone - she is suffering, you and your family are suffering, and there is no end in sight right now. It is heart breaking torture. You want to be able to either help them, and you cannot move them forward or back. Having no ability to change a situation is very stressful and upsetting.

Are there family members or friends, or members of your religious community who could help? Even if they could take a shift looking after for her for a few hours so you can have some time to rest or do something you enjoy, that would be a help. Many people in your situation will get to the breaking point before they ask for help. Reach out to people - even a neighbour who might be willing to sit with her for a little while could give you a break. It also might be worth hiring someone - not for skilled nursing, but just to keep her moving around and awake more during the day so she sleeps better at night, or to sit up with her at night so YOU can sleep.

You don't mention where you live (your name suggests Egypt?), but there may be support groups or resources out there. If you do a search on Alzheimer's and the name of your country, you may find supports. It helps to talk to others in the same situation, and it is worth searching out anything that might help you with this burden.
Here are contacts for associations in a number of countries.
http://www.alz.co.uk/associations

Don't give up. Be kind to yourself and don't blame yourself for any of this. You are doing the best you can in a very, very difficult situation and it IS exhausting and draining. It is like running a marathon uphill that never ends.  You need to look after yourself. If you become sick from stress and work, that won't help anyone - both your parents need you healthy. Give yourself permission to be creative about solutions and do not be afraid to ask for help before you reach the end of your rope.

Thinking of you.  

Alzheimer`s Disease

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Mary Gordon

Expertise

Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.

Experience

Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

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