DW just diagnosed with Early onset Alzheimer's

Kcr77056

My DW (63) has recently been diagnosed with early onset Alzheimer's so we are in the beginning stages of dealing with it. We've been through 5 months of testing. Her mother is in assisted living and soon to be in memory care for alzheimers so she sees and knows the likely progression. We have 3 grandbabies and more on the way and the thought of the disease resulting in less time with them or maybe their parents keeping them away from her is currently a source of great grief. That image is all she can focus on at this point rather than the years we will have between then and now. I am looking for advice on navigating these stages of grief and wondering how I can help her the most to move through this. The fact is the fact and we are living with it now…..but how can we move through the stages of grief and maximize these years?

Thank you

Lgb35

I don’t know how old your grand babies are but we are in a similar situation. DH will be 62 this summer. We have 4 grandkids. The two oldest are 8 and the baby is 15 months. There are some great books about memory balloons to explain what is happening for little ones.

Since she has a fear the parents will withhold the grandkids you should have a conversation with them. Let them know what is happening and the fears going forward.

I can tell you my experience with my grandfather with dementia. He did not know my name or that I was a grandchild but he did know I was someone important to him. We had some great conversations during that time. He seemed the happiest I have seen in my entire life. I guess my message here is. While my grandfather didn’t know who I was or remembered the talks, I have those moments to remember. And you don’t know how long you have. We are in year 6 in this journey and haven’t gotten to that point yet and we don’t know how long we will have to build those memories. Maybe not for him but for the grandkids.

SDianeL

So sorry about your DWs diagnosis. This forum is the place for info and support. this may help: https://www.alz.org/help-support/i-have-alz/know-what-to-expect/just-diagnosed

Russinator

I really liked what Lgb35 wrote.

????

We found out 3.5 years ago my wife has ALZ. We do not have Grandchildren and will not have any. I wanted to let you know, that the grieving never stops. As my wife declines, both of us grieve. Make the best of the time you have, and don't look back. Good luck

Kcr77056

So appreciative of the insight from each of you!

Kcr77056

Thought I would add to my previous comment. Again, still in the early stages, I am soon to be 65 and DW is soon to be 64. Any advice on making big decisions during this time…or should a person wait until there is some sort of rhythm. I can tell my DW is intimidated by things that she never did before. For example, dropping her off at our home airport skycaps and telling her I'll park the car and meet her at the gate (meaning she has to navigate security) has been our standard for decades….but she now insists she wait for me and says she has always done that. Clearly the process is now confusing to her with so many inputs in the flow. There are other examples…but the progression is happening sooner than I had anticipated. Wondering…should I accelerate retirement, etc and wondering if big decisions are good when we are still working through the stages of grief post diagnosis. Any personal experiences on "good or bad idea" appreciated.

CindyBum

I think you must get your legal stuff in order with a certified elder attorney and meet with a financial planner. It is important to get that done before your DW progresses further. I’d to the legal work first. Top priority.

I have been working at my job and beenthe sole caregiver for my DW for 6 years. It has been a brutal balancing act that I have not balanced well. It is so damn hard to do both. Even with that, I do think you have time to decide on retirement.

trottingalong

https://alzconnected.org/discussion/comment/237117#Comment_237117

It really sounds like your DW has reached the point where her understanding/comprehension/ability is compromised. She really shouldn’t be left alone while you park the car. It can be frightening for a person with dementia and there’s a good possibility she could wander off. Even though she’s done something for years, it no longer matters. Her brain is broken and you will notice more little changes happening more frequently and big changes more often.

blacksparky

I agree with CindyBum, definitely get all the legal stuff signed while you can. I got all our legal documents signed and two months later my DW wouldn’t even know what she is signing. I also got disabled plates for our car so we can get as close to where we need to be. We both traveled by air a lot but now the whole travel/ airport thing gets her too nervous and scared. Our travel days are over now. If you can still travel take advantage of it.

Goodlife2025

Retirement is a tough one and only you can make the choice of when but an attorney can help guide this difficult decision. When I told my wife's doctor our plan was to have me retire in 4 years so we could still travel. It was made clear to me that the schedule I had in my mind was not to be. I retired early so we could have these years to make our last good memories. Tough choice and financially probably was not the most sound. sigh……

Lgb35

my DH will be 62 this summer. He was just telling me how much it bothers him that he might not be there for the kids and grandkids for important events in their lives. I suggested he write them letters for milestones he would like and I will make sure they get them at the appropriate time. He can have comfort knowing he has said what he wants to say and they will hear those messages at the right times even if he can’t say it at the time.

Timmyd

https://alzconnected.org/discussion/comment/237117#Comment_237117

I have implemented a 3 month rule with regard to big decisions. I have to consistently agree with the big decision for 3 months before I move forward. For me, making big decision while in a heightened emotional state is not a good idea. I look back three years ago when we started this journey, and where I thought we would be today. I was not very good a predicting how the future unfolded. Now I try to avoid plans that are more than a couple months out. Trying to predict or understand the specifics of how inevitable decline will manifest in my DW is fool's errand. I have gotten much better at living in the moment and learning to appreciate the here and now. I try to limit my expectations of the future.

SDianeL

I was advised by people on this forum to not wait because nobody knows how the disease will progress. My daughter in law who is a nurse said the sane thing. I guess I was in denial because I didn’t have a plan B. I did take my brother in law’s advise and met with an attorney immediately after the diagnosis. 6 months later my husband could no longer read and understand documents or sign his name. Your LO is already having difficulty with tasks and probably difficulty making decisions. Because of that, I think the decisions should be yours alone. You can no longer expect her to reason. Her reasoner is broken. Please don’t delay. 💜