Dealing with People With Dementia
For me, the most challenging times of dealing with people has been when they had behavior changes due to dementia in the early, middle and later stages. Each stage has its own unique challenges. Whether it is a neighbor, a friend or family member, when someone loses the normal social relation skills it can challenge us in ways we never imagined.
Feel free to share your story here or PM me if you have resources or questions you want to share and I can start other threads in this subforum about Caring for People in Our Lives.
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@soulsings
I am very glad that you brought up this topic because it affects or can affect all of us in different ways, maybe just someone we know, maybe someone who is closer to us. I personally know a number of people who suffered or are still suffering from dementia, somebody in the early stage (I guess) but also someone in the very late stage. Dementia in the stage where a person still realizes what is going on with them must be terribly confusing for the person but also very hard to see for the relatives how much they suffer. It can take a toll on both sides.
@amiablePeace77 thanks hope that anyone who has any experience even indirectly will feel free to share here or in another thread in Caring for Others in Our Lives.
Hello.
My mother has recently been diagnosed with what might be Mild Cognitive Impairment, however, I am waiting until we see a geriatrician or other medical specialist to propertly identify the condition. My father had dementia as well, and he passed away in 2001.
I am only 43, and I am the only family that my mother has, and she is the only family I have. I have no close friends in the area, and am a relatively private person. I have the responsibility of "looking after her" and the responsibility is immense. I have arranged for my mother to receive home care to assist with housework and personal care, signed her up for an Adult Day Program, and have lost track of everything that I have done for her in the past two weeks.
I realize that my mother and I do not do well when we are together, and as a result, I chose to keep a distance to protect myself from the drama and chaos. I talk to my mother twice a day (a.m. and p.m.), and luckily, my mother knows that when she gets to the ppoint of needing more care, she is receptive to going into a long-term care facility.
I have several questions RE: trying to deal with my mother's diagnosis and the struggle to maintain what little sanity I have. My
1. How do not take the anger and hostility personally?
2 What are some good ways to manage stress while caring for someone with a cognitive impairment?
3. How do you separate the feelings of grief and loss from the stress and frustration of caring for a loved one?
I look forward to reading your responses, and any advice or suggestions you might have.
@amusingCranberry1537 I am so sorry for the change of condition of your mother. Even though she is still with us, there is a change and a loss of part of how we relate to each other when someone has dementia.
You asked
1. How do I not take the anger and hostility personally? This is the most challenging for me. The first thing I have had to practice is not reacting. That means I am somewhat less personable because my personal editor in my mind is reviewing what I say before I say it. I say a lot of "I am sorry you feel that way. It must be difficult for you." Often that deflects the comment and they pick up on the difficult part and tell me how difficult it is. This is giving validation and empathy in return for their hostility and anger. I focus on keeping myself safe. I may have to make a trip to the bathroom after excusing myself if it gets too much.
2 What are some good ways to manage stress while caring for someone with a cognitive impairment? Each person will find their own ways that work best for them but for me I really like exercise and Tai Chi every day to keep me grounded and keep my energy up. I stay away from things that make me lose control of my emotions like sugar and intoxicants, though I love a strong cup of peppermint tea. I really value getting out on my own away from the person if I am living with them. That can be attending an exercise class, grocery shopping or doing errands. Talking to a friend on the phone is nice when I am out of the house also.
3. How do you separate the feelings of grief and loss from the stress and frustration of caring for a loved one? For me this is as hard as anger. I have to act as if this person is going to be here forever, but I feel them slowly slipping away. It is like watching someone die one day at a time. Almost like slow motion. It is painful. For me the way I handle this is I see this as a down payment of all the nurturing they gave me so I could survive childhood and grow to adulthood. It was not a perfect relationship. But they put food on the table and clothes on my back. They were there when I went through tough times. They did not always understand but they were telling me I could get through this.
I think of this every time I am with them. This is how I want to remember relating to them as a caring nurturing person. I can only do the best I can and that they will let me. It is a work in progress. Hope some of this helps.
@soulsings
Thank you very much for your response to my post, as well as your in-depth insight into caring for elderly parents with dementia. For the moment, I am taking one day at a time and am trying to focus on being mindful.
@amusingCranberry1537 you are welcome! I think everyone can benefit from living one day at a time.
@soulsings I read the original and was thinking we've had very little in our family - my Aunt's husband did but did his best to hide it for a long time so know what she had to deal with. Your answer here is exactly what we had to do not to the same extent except for my Aunt. It is hard to separate when they get angry or abusive but what you said about remembering they brought you up and got you through to adulthood is an important reminder to all of us to care for the older members of our family. And it is very important to have alone time, even if it's to do shopping, or exercise or talking to a friend.
Hugs
@amusingCranberry1537
I know what you're going through. I had the same situation with my mom, even including the part about how difficult our own relationship was. Getting a formal diagnosis was immensely helpful to her and to me. We were both in denial about the extent her cognitive impairment was. It was recommended that she move from her condo (where I ended up getting her 24 hour, round the clock help) into an assisted living environment so she would be more interactive and her days would be more full. The doctor said that sitting on the couch with a caregiver would cost her, her mind. She needed to be more challenged. A more social and educational environment would be hugely beneficial. She fought it at first and then agreed and while she liked her small apartment there (this was NOT a nursing home environment) she was so mad at me for pushing her there and I've had to live with that guilt.
But, there were 300 people like her and her contemporaries. She passed away of heart failure after living there about 10 months. That was 2 years ago. As hard as it was, I would make the same choices with/for her if I had to do it again.
I berated myself throughout the whole process of her illness, passing and the settling of her estate. I have always been good at being hard on myself but I think in this situation, it just comes with the territory. And, while you say you don't have family, I do. And, everyone had an opinion, was critical and suggestive, yet did not help at all. 99% was left to me and thank g-d for my husband and my children.
Your anger is justified, the hurt is justified, but at some point we have to come to terms with all of it. Life is just hard. It's a double edge sword when you love your Mom and yet, it's a difficult situation between you. My Mom was a badass, she could be so mean and then love you to pieces. She messed me up for a long time, me waiting for the other shoe to drop.
I too, am the only daughter. I only have brothers.
But, now I am at peace with how I treated her and the care and love I gave her. But, that feeling comes later, much later. While you're in the thick of it, it's tough.
Be kind to you....you are trying your best. It's a path that is thrust on us and we rise to the demands. But, it is not an easy path. Not for the elderly and not for the daughter.
I hope I have helped you in some small way.
Be well.
@MFZM29
Thank you for your kind words. Over the past several months, I have come to realize that it is best to take things moment by moment and that there is only so much that I can do.
@amusingCranberry1537 oh how true those words "take things moment by moment"
We are all in this together.
Thank you for your support. Im tired of trying here. TC.
@Lauren63 I think you really are trying and I respect you for that.
@soulsings Thanks. Having a motivational partner is going to help. As I said in a different post, I know people here have been supportive. Now I just need to believe it, if you understand what I am trying to say.
@Lauren63 I understand what you are saying. One of the biggest challenges I have faced in my life is not seeing that what is happening is a blessing even if I have no idea how that could be.
Some of the greatedst lessons in my life have been from the biggest challenges I faced. "Just keep going on" I keep telling myself. "Never, ever, give up going on" I tell myself. Even when things don't make senses I keep going on.
All the forums Ive visited are about how well the caregiver is dealing w/ the everyday that go along with taking care of someone w/ dementia. Ive not found a ‘safe Space to say that I hate this! I DO NOT LIKE the woman I am taking care of. She is my mother in law & we never had a great relationship from the start. Ive been married to her son for over 40 years and now find myself being the sole caregiver of this woman. Her son cannot bathe, dress her, apply ointment on her breasts, put in suppositories and such. Her awfulness isnt due to dementia, in fact the dementia has made her worse. I love my husband and theres no end in sight.
@Lindajc It must be rough dealing with someone that tends to trigger negaitive responses. I have found that seeing I do not have much patience naturally, when I have to work closely with people that are opposite to me, I do have the opportunity to learn compassion and patience, if only a very slow rate.
I am so sorry you have the whole thing on your shoulders. How would it be if you did those things that a son prefers not to do for his mother and he does the social things and feedings and such? That might make you feel less burdened.
I'm currently facing this with someone who I've been with 37 years and he's now going through the early stages of dementia and it's already hard and I can't even imagine what's to come. Back when my family was mostly living we took care of my grandmother who had Alzheimer's and then my mother who ended up with dementia and lived to 90 and now I'm facing this all alone with no help no family no resources nothing. I just hope I can hold it together and look and find some resources out there that can be helpful for this situation and take care of him enough as it progresses as I've loved him for so many years.
@soulsings
Great Post!!
@exquisitePeace7976 thanks for your kind words
@soulsings. My partner is having some memory problems. He hasn’t been diagnosed with anything yet. Thanks for the suggestions that I have seen here. I have to remember to not take his anger personally. I am also going into the other room and do a breathing video when I get overwhelmed. I find this helpful.
@adventurousBranch3786 I am glad the suggestion helped. My mom has shown progressive signs of going deeper into dementia but she keeps insisting nothing is wrong. I doubt she ever will although some people can face that head on. She does not seem to be one of them.
Wishing you patience and self control as the memory issues become more obvious. For educational info and support https://www.alz.org
@soulsings Thanks for the link👍.
@adventurousBranch3786 you are welcome
Well, I tried four times to post here about dementia-related things but a certain subset dementia and I've taking care of quite a few people with dementia in my best friend has dementia and going through it but the subsets I was posting to about is quite different and I've never dealt with it but it kept flagging it and so I tried to message you I go through all that after losing four of them here and it flag in it and wouldn't let me post it in I message you and go through all that and then it flags that and won't let that go through and shows how you're not taking messages so I guess this is no way to talk about this dementia so oh well my laptop don't work can't see to work on my phone this tablet is old dead Pisa whatever
@OverlyStresed
Hello there, I can read your post, do you maybe need help in creating a thread in the sub-forum?
Is it that what you wanted to do?
You can share here about your experience or contact me or @soulsings to be guided in post creation.
Take care!
@OverlyStresed I am sorry you had a difficult times. I think they have had some glitches on site that may have been the cause of the problem.