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First time posting. Not even sure what I want to say.
My mom has AD and is in stage 6A or so. She was diagnosed about 1 1/2 years ago, but had symptoms for several years before that, though they were thought to be stress-related at the time.
I have so many conflicting emotions, sometimes all at once. I miss her terribly (her old self, I mean). I feel guilty that a) I strongly suspected she had AD for years, but let everyone around her buy into the stress excuse and b) I don't visit often--she is in the same state but not super close and c) I am already thinking of her as "gone" in many ways, though she is still here. I'm afraid that when I next see her she'll have some kind of an outburst or mood swing that I don't know how to handle. I feel incredibly inept when I do see her because I don't know how to keep her occupied or what to talk about, since she can't hold a real conversation. I feel hopeless knowing that it's just going to get worse/harder, and angry that neighbors/friends/family often seem clueless about what she can/can't do. I worry that I'll end up with AD too--my grandmother (her mother) also had dementia, though not AD. (As an aside, if she was displaying symptoms well before 65 but not diagnosed until after 70, does that mean it was undiagnosed early onset? That makes me even more worried.)
Clearly there are no easy answers, and I know that everyone here has been through this. If anyone has any advice about how to manage this emotional turmoil, I'm all ears.
Thanks for reading.
Aquamarine - welcome to the group no one wants to need. We are all at different stages on this long journey and help each other along the way. You have a lot on your mind and heart. Sending you (((hugs))) and assurances that there is understanding, helpful input from others who know because we are living it too.
Others will come along and have more to say. There is lots to read and learn right here on these boards - mainly that yes, she will get worse and likely sooner than later. So, it is best to prepare some things as that will at least help avoid some crises that you don't need. Wishing you the best possible outcome from this roller coaster ride called dementia.
Our visits to MC with my FIL were very short for the reasons you mentioned. We mainly talk to him (not really with him much anymore) but we bring up happy memories, trips, hobbies he liked. For my FIL we talk chickens because he really enjoyed chickens growing up. We retell back to him stories he told us over the years.
Im experiencing the guilt.By what ive read most seem to experience that if they cared about their loved one.You sound like you have given and given.Dont beat yourself up.Do the best you can.
Please dont be in fear that you will have symptons.Not everyone gets the same genes.
Keep in touch with this group.
Hi aquamarine - welcome to 'here'...
You are feeling what a lot of us go through. ((hugs)) This is hard. It is hard to see our LO slipping away while they are still here. It is hard to know just what to say to them sometimes. It is hard dealing with all the obstacles that come with it.
My mother and I were never close. She calls me more now than she ever used to, even though it is the same conversation over and over - like on a loop. I knew my MIL before 'this' dreadful 'thing' and I'm glad I did, because so often now, this disease talks. With both of our moms, one a nurse, and one a teacher, it is hard to deal with all that is involved.
In any case - do know that those feelings are normal - and you are not alone!
I will say this:
Conflicting emotions is a symptom of literally everyone who has an ailing loved one. What would be most important to you is to acknowledge how you are feeling at that moment and try to discover why.
For instance: I was not close with my mom. Caring for her literally got dumped in my lap. I have six siblings and they either can't care for mom or won't. This is what went through my head for the last year and a half:
1. This is a great chance for me to connect with my mom after a lifetime of never being acknowledged for anything good!
2. I know I can give her the care she needs.
3. I better handle this situation, I've done it before with elderly clients.
4. I had to get her a COVID shot because it was interfering with her medical care.
5. Why is she complaining?
6. Why is she acting like this?
7. My mom says my oldest sister is exactly like how she was...mom was that much of a B!^%$??? REALLY????
8. Why is she complaining more???
9. I want out
10. I don't want to do this any more, I am not good at this.
11. I have no F-ing clue what I am doing...I want out. I miss my kids and my granddaughter.
12. She needs more monitoring, I miss my kids...I'm losing money at my job, she doesn't want me here, she is complaining more which means I am not doing enough...I WANT OUT!!!!!!!
So you see, I am pretty resentful. I am angry. I am frustrated that mom instinctively chooses not to connect with me wholeheartedly...instinctively choosing. Key word underlined.
Identify the feeling, address it, consider where it came from, and if anything, show your mom that you love her when you do visit. They remember impactful gestures.
Hi Aquamarine. It's okay that you're feeling the way that you are, it means that you care and want to do right by your mom even though it's challenging. While I and my family are still in the beginnings of dealing with dementia, I hope I can offer you some insight.
You've mentioned that friends and family are unaware about what your mom is or isn't capable of doing. Maybe you can find some resources online like "what to expect with dementia/Alzheimer's" and give it to the others to help them understand what this disease does and how it can affect people.
Sometimes people don't know much about it until it's right there in their metaphorical lap and need to learn it. It is only a starting point and it might help. Perhaps when they know what to expect with the diagnosis, maybe they will offer to relieve some of your troubles.
Definitely continue to reach out to others! Someone recently told me that it can take a village to care for a person with dementia, so do not feel bad if you can't do it alone. If people don't quite understand what's happening, keep trying or try someone else until you find something that works. This is something I keep telling myself too.
Thanks everyone. I really appreciate your comments. It helps to know these feelings are normal.