Early Alzheimer’s dementia

jMel2024

Hi everyone. My father informed me today that my mom (who is 72) was just diagnosed with early Alzheimer’s dementia. I noticed she would forget things a little more recently, ask the same question a few times, and misplace her phone, keys, etc. my father pulled me aside and told me about the diagnosis after the pet-scan. Obviously I was devastated and simply have no idea what to do. My wife and I just had our first child, and I cannot fathom the idea of my mother eventually not being able to know who her granddaughter is. I know this is inevitable, and I really don’t know what type of questions I should be asking. In actuality, I don’t know what to think. I don’t know what to do. I guess I’m just looking to rant to make myself feel better, which is selfish I know. Any advice would be appreciated. Thanks for listening.

concerned_sister

Hi JMel2024,

I'm sorry your family is dealing with this diagnosis. Read as many threads as you can to learn from the journey of others. You will noticed there is a link to "Groups". I highly recommend you click there and then go to the group for new caregivers. There's a lot of information there that is particularly helpful to those new to the journey.

jMel2024

https://alzconnected.org/discussion/comment/216168#Comment_216168

Thank you so much for your advice. I appreciate you taking your time to respond.

M1

Welcome to the forum, you can learn a lot here. Look under Groups to the right, there is one for new members with lots of useful information. Be sure they have legal and financial affairs in order, that's a huge first step.

just a minor point, but i think you mean she has early stage dementia, not early onset- which typically means diagnosis before age 65. Those with true early onset tend to progress more rapidly and die sooner than those diagnosed later in life. There is a link to a useful staging tool in the new members group information.

jMel2024

Thank you. I was just going by what my dad told me this evening. He must have misunderstood the doctor. Our heads are spinning at this point, so thank you so much for the advice.

H1235

So sorry. I agree with all the above advice. Making sure legal matters are taken care of is very important! Caregiving is really rough, if something were to happen to your dad you or someone else needs the legal power to step in and the same for your dad since your mom can no longer do that. You mentioned that your dad must have misunderstood the doctor. You might want to really keep an eye on him and how he is doing with all this. He may need a break now and then or a second set of ears at a doctors appointment. It my be helpful for you to share some of the things you have found here. There is a lot of useful information here. I have found comfort in learning more about dementia and how best to handle different situations. Knowing what to say or not say to a person with dementia can make a big difference. I hope something here is helpful.

jMel2024

https://alzconnected.org/discussion/comment/216197#Comment_216197

Thank you. I know my father is exhausted. It’s a lot on him. Great suggestion on being a second set of ears at the doctor appointments. She has an appt this Friday actually, and I think I will be attending. Great advice!

SusanB-dil

Hi jMel2024 - welcome to 'here' but sorry for the reason. Good for you for also watching out for dad. He will need some respite sometimes.

It seems that she still knows who you are. Yes, the decline is inevitable, but nobody knows the time trajectory. If you've met one person with dementia, you've met one person with dementia.

Do make sure you get some pictures with grandma/granddaughter and other photos while she does know you.

Do not feel selfish to rant - most of us here at times just want to stomp our feet and bang a wall!

Also do check out the 'resources' tab over on the right side of the page. Lots of advice and commiseration in the forum, and lots of information at the resources.

jMel2024

Thank you so much. I’m taking this news really hard, and I know my mom is taking it harder than I am. She is very upset and can’t deal with the fact that eventually she’s not going to know her family anymore. Thank you for your advice. I appreciate it more than I can ever explain. I’m

M1

JMel, you may soon find that it's kindest not to discuss you mother's diagnosis with her and not to remind her of her deficits. Educate yourself about anosognosia, most people with dementia can't perceive their limitations and become defensive and upset if constantly reminded. She may also soon forget any discussion with the doctors. It's more for the rest of the family to grieve separately. Most of us here don't discuss it with our loved ones and learn workarounds to care for them and keep them safe. Dementia is a terrible thief and you will grieve for a long time, sadly.

jMel2024

https://alzconnected.org/discussion/comment/216280#Comment_216280

That is excellent advice, thank you. We have all been extremely positive around her, and I’m trying my best to keep it together. I won’t let her know I’m upset, as this will just upset her more. The worst part is that I have already started grieving, and my mom is still with us. It’s going to take the rest of my life to feel any sense of normalcy, which is terrifying to me. Again, that’s me being selfish. This shouldn’t be about me. It’s about my mom. It’s just so hard.

concerned_sister

Grieving your own losses and caring for your mother deeply and about what's happening to her are not mutually exclusive. Your feelings are valid.

JeffCut

Never easy 🙏

Educate yourself, and your parents as best you can. There is only so much you can do, other than enjoying the time with her. Takes time, but accept it is part of who she is. I could get hit by a bus tomorrow...so I focus on the day I'm with my Mother, not potential "futures". That gets easier with time.

harshedbuzz

@jMel2024

Hi and welcome. I am sorry for your reason to be here, but pleased you found this place.

When one person has dementia, the entire family "has" it as well. Your loss is real. What you're feeling isn't selfish, you are in the process of losing not only your mom as you knew her but also the future hopes you had for your little girl having this special person in her life.

I agree with the others that you need to put on your game-face and protect your mom from what you may be feeling. The ability to read the emotions of others is well preserved into the later stages of the disease. I also endorse the legal advice already given and would add the need for you to have a Plan B in your back pocket should dad be unable to care for mom for some reason.

You seem very focused on her forgetting family. Every PWD is different. This may or may not happen. And it may not be everybody. Often memories with a very strong emotional component are recalled longer, other times memory is LIFO. My dad knew who most of us were until he died; towards the end he was hazy on my son who he confused with his urologist and referred to my DH (not a fan) of 35 years as "the guy I was shacking up with". But he knew mom, me, his brother and his granddaughters.

HB

psg712

Agree with HB's comments about forgetting family. My mom is at least five years (probably longer) into Alzheimers. She cannot identify me by name or as her daughter, but she lights up with a smile when she sees me. She does the same with my young son, whom she calls "the boy". We are definitely still her people. I am grateful that she can enjoy our love and presence.

harshedbuzz

https://alzconnected.org/discussion/comment/217613#Comment_217613

My friend who moved her mom in with her and served as a primary caregiver had the bittersweet experience of her mom thinking she was an aide. She would tell my friend about how she was her favorite aide and how she reminded her of her own daughter and then would describe my friend in the most glowing of terms.