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My mother was diagnosed with Alzheimers and vascular dementia last February. She is 83 and has always been fiercely independent. She still lives in her own home and hopefully I will be able to keep her there for the remainder of her time. I am in the process of taking early retirement to look after her. She is by no means at the stage where she requires 24 hour care yet but she definitely needs help with cooking, cleaning and personal care. While I am 100% certain that I have done the right… read more
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Members connected over the challenge of caring for loved ones with Alzheimer's who display negativity and refuse to communicate, with many... Read more
This is a wonderful thread. My mun used to say when she was younger "how important is it?" Also "if you don't have anything nice to say, say nothing"
She has alzheimers for the last 11 years. Now she says things like "do look particularly FAT in that coat" I just smiled and donated the coat to charity. Now I am not a saint but no matter if you were the Dali Lama, you will experience anger frustration and RAGE. I am so pissed off at the system that can't cope with people living with dementia in the community. There is no earthly reason for mum to go into a nursing home but the system is trying to force me there. But I am a stubborn bitch.
My mum taught me to be nice but that gets you no where in the system, so for the sake of your loved one, parent spouse child or friend.
YOU have my permission to be a pain in the systems ass. Be akward, they are paid to help and advise you. You are caring for your loved one, I enjoyed my work too. But the bottom line is, when I was at work I was paying someone to look out for my mum. They were earning more than me.
That said I admire people who say my priorities are career family or just having a nice life.;You (society) have to deal with it.
Sorry if this is strange but in caring for my mum I have developed Reactive Stress due to caring. Which causes insomnia. This I have never had before, it is particularly horrible. So I have had 4 hours sleep and up for 5 hours. It is 7am and the day is about to start.
Good luck
ps mum complains if I don't do the washing up in a timely manner but when I do. I use too much washing up liquid. No matter how much patience you possess you will need more.
Try not to be so hard on yourself. I was feeling so guilty and knew I was not handling it the way I should. As I said I am not as patient as I could be. Especially with my husband. I was an emotional wreak
Last month as the magnitude of what lies ahead was just too much. I felt very alone. We can not change the situation and it will only progress. I have come to terms with that. My doctor suggested I see
a therapist to talk things out. That helps a lot and I feel I am much better equipped to handle my mom and husband. Two things she taught me were very helpful. First, when I ask my husband to do something and he doesn't want to I ask myself, why is this so important? What is my motivation behind it. Is it to make me feel better or is it truly for the benefit of my mom or husband. The second piece of advice is to not look backward or too far forward. I try to live in the present. If I look too far forward I get overwhelmed.
I also volunteer at our local foodbank twice a week. It helped me to take it off of myself and how I was feeling and put it on serving others. This has helped tremendously. Lastly, I said I always felt alone. I realized that I was withdrawing into myself and distancing myself from everyone. My friends were there I just needed to reach out.
I hope this helps. Feel free to message me anytime. Take care of yourself!
@A myALZteam Member: My heart goes out to you. Being that far from your parents must be killing you especially knowing and seeing what is going on. Someone wrote in another thread that never was it said at anyone's wake or funeral "what a great person but their house needed to be cleaned up." Unless its absolutely necessary to clean up the place let it be. If your mother is not objectionable to it hire someone to come in and clean the house. Telling your mom that she deserves to have someone come and do the "heavy stuff". Visit with your folks don't be seen cleaning her house. Use a glass or something and use that excuse to clean up the others that may be laying around. THINK CREATIVIY and use it to your advantage. Take her out food shopping take inventory of what is or isn't needed and when you get home to put them away, use that time to pick up other things
One of the basic signs and something we should all be aware of is the tendency of physically lashing out. If your mom has struck you it is time to have a conversation with her doctor. This is not a healthy situation as she may be lashing out at your father when you're not there.
KNOW THAT YOU ARE DOING RIGHT WITH ALL OF YOUR DECISSIONS. DO NOT SECOND GUESS YOURSELF. If something feels wrong chances are it is wrong. NO ONE knows your loved ones better than you. And remember YOU ARE NOT ALONE. We are here for you and one another. God Bless
@A myALZteam Member You are more than welcome and know you are not alone. You will find this group a "Knight in shining armor" for yourself as we try to answer these questions based on our own experiences and you will too as time goes by. But keep in mind what works for me may not work for you and your loved one.
I seriously recommend that if your loved one is still capable to respond and know or are aware of their surroundings to make as many memories with them it will help (and sometimes hurt) you as time progresses and their diminishes. Take pictures and date them, you may find big differences in the matter of month or years; but it will help you in the long run to chronicle the changes in her.
If your loved one is still at home with you and you run into difficulties with their behavior remember your phone has the capacity to take videos so use it as reference for doctors visits. My mother was having episodes where she wouldn't or couldn't respond just slumped in a chair. I took a video of what was happening and was able to show what I was talking about to the doctor so he understood better and see what was actually happening and was able to diagnose that she was having mini seizures and not necessary strokes.
I hope you find some of this helpful, and if you should ever find you need to talk to someone; just send me a note and I will be more than happy to help you along to the best of my ability. And this goes for anyone else out there who is having difficulties. PLEASE REMEMBER YOU ARE NOT ALONE. WE ALL ARE HERE TO HELP, LISTEN OR WHATEVER WE CAN FOR YOU.
Hi DonnaEH
Lack of sleep is certainly no fun, especially if you have a job to go to. My bedroom light is always turned on at least once every night in the early hours as I generally wake a few times. As soon as the thoughts start whirring round in my mind, I pick up a magazine or book and start to read. I find this helps dampen down the thoughts and usually helps me to drift back off again.. I am currently reading a book that was recommended by a fellow member entitled Before I Forget, and it is really giving me an insight into Alzheimers from a sufferers perspective as well as the carers perspective and I have to say it is amazing. I feel I am learning so much from it and am hoping that I will be able to handle the situation differently and learn better ways to cope,the more informed I become. As carers, I am hearing more that anything else that taking care of ourselves has to be a priority. We all have limits and there should be no shame in stepping back now and then to recharge.
Take care.. Hugs x
@A myALZteam Member Thank you so much for the recommendation... God bless you..
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