Introductions: Are you caring for someone with dementia?

Hello Everyone,
I just joined tonight. I have no idea where these posts go so I found this introductory post by Scott and thought it was a good place to start. My mother passed away decades ago after living with Alzheimer's for only a few years. I miss her; she was gone before she died. I have a dear friend who is showing symptoms that remind me of my mother. I see waves of behavior (reacting with sudden anxious responses, self-absorbed, intense difficulty understanding or remembering whole ranges of topics) that are the opposite of her personality (gentle, strong, and highly intelligent) and am transported back to trying desperately to hold on to my mother. I started reading these posts and instantly felt that I am not alone and walking in helpless misery as my friend unravels. I am, instead, surrounded by people who understand. I wish she would get tested and we could be more open about what is going on. I fear it will have to get worse before that would ever happen. But know that your willingness to share in this group has rescued another person from despair. Thank you.

Good day, @lindakbe Welcome to Connect. I am glad you found our community here. Personally, I came to Connect when I was feeling very isolated by my caregiving responsibilities. I am sorry about the loss of your mother and to read about your friend's struggles. I remember in my MIL's situation there was an incredible amount of denial among family members who (in my view) wasted a lot of time in denial rather than accepting the changes and living the best relationship they could with my MIL. Unfortunately, there are folks who just seem unable to accept the change in a loved one as in the case of my in-laws. Even after many years of disease and now past her death, some still refuse to acknowledge my MIL had dementia. On the other hand, my wife gently did what she could to help her dad realize what he needed for help and to do some things to help keep her mom safer.

It can be a tough road to navigate for sure, but it is wonderful to read you are interested in helping your friend! You are right -- you are not alone!

If I may ask, what is your biggest concern for your friend right now?

Strength, Courage, & Peace

Your reply comforted me; your question challenged me. My biggest concern is that she will suffer needlessly because she is not diagnosed. I ache that she may be crying for hours, alone and bewildered with her mind unraveling. Sometimes she tells me how upsetting it is to not be able to do what she used to do. But then sometimes, actually most of the time that she is acting unlike her old self she seems to think she is okay and it is me that is lacking. I just don't know to navigate this path; I am walking it with a blindfold on. Will waiting until things get so bad enough that she realizes she needs help be a better course of action if trying to urge her to get medical help makes her so upset? I just don't know what to do. Thank you all for being there.

Hi @lindakbe - I'm wondering if your friend has any close family members you can talk to about the changes you've observed. Does your friend express any concern for herself about what is going on? That might open the path to a suggestion that she see her doctor. Is she still able to manage her home and surroundings okay? Is she safe where she is? I observed behavioral changes in my husband for six months. With his permission, I wrote them down and sent a letter to his primary care doctor, who referred him to a neurologist. He had an MRI and neurpsychological testing which led to a diagnosis of Alzheimer's Disease. Later his doctor told me that the letter was so helpful because it gave him a sense of what was going on. Many times, patients in similar situations showed up for appointments with no explanation about why they were there. I wish you the best with this - she is fortunate to have such a good friend.

Hi, @lindakbe I agree with you. Caregiving, or caring for someone, often leaves us walking blindfolded. I have never met anyone who was ever prepared to be a caregiver. We get no training, no manual, no job description, just finding ourselves in the water and trying our best to swim.

One of the biggest challenges to me was realizing much of what I witnessed in my wife was not her, but her disease acting, speaking, reacting, etc. to her world. I always said in my life I was married to one woman, but two people. My wife was in charge of the first person, her disease was in charge of the second. I doubt most of the years, my wife ever realized that her world was entirely different than before. That said, except for a tiny few times, my wife never realized her changes, so your friend might not either. I had to watch for those times/things that were dangerous and take the reins to avoid harm or catastrophe. The toughest might have been when I had to take the car keys away. With my MIL she never realized she thought the UPS man was her husband or that the sidewalk was not the street. Others had to gently guide her from those mistakes, but she was never aware of the 'mistakes' she was making. Her disease had robbed her of that ability.

It is hard to navigate and differentiate when the disease is in control.

Might your friend's doctor be able to help her with this during a 'regular' physical?

Strength, Courage, & Peace

Hello, @tsc
Thank you for your reply. What you went through getting your husband help must have taken much strength.

I could talk to one family member, but I am concerned that in an effort to help her (and me) she may think I am talking behind her back. Then she may pull away into her anxious quietness even more. I do know I need support and it is my responsibility to get it. She did express concern for a few months but not anymore. She can manage her home and surroundings okay and has many family members who are happy to help with anything she can't do. Sometimes I think I will have to let things unravel until she sees a need for help. I will remember the letter. That is a good idea. Thank you again.

Remembering your words that it is the disease (if that is what is happening with her) causing the changes and her actions that are not really her choice has helped me feel calmer around her. If you don't mind me asking, did your wife or MIL ever get angrily anxious and start going on so much that you had to set a boundary? It doesn't seem to help her to let her keep getting more and more upset at me, and it definitely hurts me. It just seems that if it is all from a disease I should not set a boundary at all because she can't help it? Oh, this is hard. I plan on sharing this situation with my doctor and seek her advice.
Thank you for sharing what must be very difficult memories.

Hi, @lindakbe I never mind answering questions! During my journey all too often I felt as if I was on a path alone, so I am more than willing to share here.

We all need to set boundaries. Unfortunately, I don't have much help in that area since I was with my wife 24/7/365 so boundaries were pretty nonexistent for the two of us.

My MIL went uncommunicative (a totally different kind of challenge) fairly early in her disease, but my wife remained vocal for her entire journey. Luckily her communications rarely turned ugly, but more often than not they were incessant. Certainly, at times the words my wife said to me hurt or were unfair, but I trained myself to ignore those times, tell myself I needed to be appreciative that she still wanted to talk with me, and worked on developing thicker skin. The harsh, hurtful words of family members who were consistently critical of my caring for my wife were far more difficult for me to get over, then again I know I've been guilty of being too harsh at times, too. 🙂

Until the final few weeks of my wife's war, her doctors were never able to get a handle on managing her anxiety, so that was a constant companion with us. It often made me feel like I was the ball in a pinball machine! I tried many things to try and calm that anxiety, but never really conquered it. I chalked much of that up to the fact she knew her disease was fatal and those thoughts must have been intensely scary and overwhelming at times.

Feel free to ask me anything -- especially if I've missed the mark here.
Strength, Courage, & Peace

Hi @lindakbe I understand the Alzheimer's Association has counsellors people can talk to for guidance. Maybe that would help. Your friend is fortunate to have such a caring friend. Take care.

I need to research stages. Only been caregiver to my Mother ,88, for a year