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Rellie76 · July 20

Hi Everyone. Been reading alot of your posts for the past few months and now am ready to jump in with our journey. DH is 67 and I am 58. I was able to retire in 2024 and noticed some behavior regarding his memory. Not able to multi task (more so than usual) Got all the testing done and DH was diagnosed w/Alz about a year ago. He began getting Kisunla infusions in September. MRI in between. But ended up having a stroke in December. That stroke has seemed to advance or push up his Alz. His short term memory is practically non existent. Repeating the same questions in succession. What is today. Where are we going. What time is the Diamondbacks game on. Having a conversation about anything important or new, such as money or household concerns, is futile. He cannot follow along or add anything to the conversation. I've had to take over all his medication, all the household finances, etc. I'm feeling all the feelings! Anger, sadness, resentment, jealous of our friends who are doing things together. I'm overwhelmed. Lonely. Ashamed of feeling all these feelings at the same time. He is not driving. Blames me. Doesn't want to do anything beside sit in front of the TV. He was never one for exercise before, but really won't do much now. Trying to get him to move is difficult. I'm doing my best trying to convince him to do a chore or two. Or go to the grocery store with me. (we are in AZ and too hot for outdoor activities). Our 28yr old Dtr lives with us now to help out. However she is still adjusting to seeing her dad this way. I just wanted to say hello to you all and that I am looking forward to having your support and supporting you in any way I can.

jgreen · July 20

You’ve got my love and support, @Rellie76 So glad you found us and ‘jumped in’. Sorry you had to join the ‘club’ that no one wants to be a member of!

Since you’ve been reading posts for a couple of months, I imagine you’ve noticed several themes: get legal affairs in order, don’t argue or try to reason with someone whose brain is broken, and find ways to take a break and re-charge. So glad to see your daughter is there to help out. Our son lives with us and has been a Godsend. I told him early on that his main focus was to be on me and make sure I was okay. I would be primary caregiver for his Dad. If I need, he does step up and take care of Dad so I can take a nap, or when I just cannot handle DH when he gets agitated and wants to do something unsafe. Establishing that primary role for my son has worked for us.

Check in once in a while to let us know how you and your family are doing. We care.

fatherMiguellove · July 20

I am also New to this. My father was diagnosed with Alzheimer's recently (2 months), he is 90 years old, and my mother just passed away almost 3 months ago from cancer. So not only is he missing his wife of 62 years, but he is also going through his own health issues. I am a teacher, and usually enjoy my summer's off, but this summer is different , of course. It is so hard to see my father alone. I have 6 siblings, but since I live very close to my dad, it seems like I am usually the only one here. I guess, I get it, 4 of them have full time jobs, and 2 of them live 4 hours away. But it is tiresome and I am trying to keep myself healthy to be able to do this.

MrsJWin · July 20

I too, am new to this. My husband will be 65 next week (I'm 53) and was diagnosed with dementia almost two years ago. To others, he "seems normal" (I hate that word, normal) but to a few, they are noticing he is really disconnected lately. Has difficulty participating in conversations or will inappropriately interject (not sure if he's feel left out or just trying). He needs constant reminders of what he's doing or going and gets mad if he's "having a good day" and I remind one-too-many times. I've had to take over all the finances, appointments, scheduling any house repairs, ect. AND I still work full-time; he's been retired for years from the military. I'm getting so worn out and feeling lost and alone. It is scary!

Michele P · July 21

https://alzconnected.org/discussion/comment/277842#Comment_277842

If you have not reached out to the VA Veteran Service Officer(VSO), do so. The VA will assign you a social worker who will explain everything that is available for your husband’s care. The Elizabeth Dole Foundation is another excellent resource.

whytever · July 21

https://alzconnected.org/discussion/76606/new-to-this

Hello @Rellie76 My DH is 67; I'm 58. He was diagnosed with MCI due to AD June 2025. He was on the Leqembi infusions but had micro brain bleeds and then a DVT in his left leg. Was put on eliquis for 3 months; we finally got the clearance to restart Leqembi, which he wanted to do. I've searched for someone with my exact situation and am so glad you have joined in. It's so hard to repeat portions of the story all day, everyday. While my husband still drives and does our finances, I estimate it won't be long before he cannot do either. I'm sad most days and, to your point, jealous of our friends who are doing so much. This is not the way I planned our future together. Well—I'm glad you found us. Hang in there. Find people who can support you and understand your situation.

harshedbuzz · July 21

@Rellie76

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

Early onset dementia is an especially awful version of an already devastating condition. I'm so sorry.

Your daughter might benefit from this organization:

https://www.lorenzoshouse.org/

HB

Rellie76 · July 21

https://alzconnected.org/discussion/comment/277924#Comment_277924

We have similar situations. Glad to know at the very least, we are not alone.

dcare45 · July 21

Hi Rellie76 Glad you have joined us.

My DW and I have been on our journey for a number of years now and I have only recently joined up. I made the mistake of thinking joining a support group or chat wouldn't benefit much. I was wrong. This is a good place to pick up information and caregiver tips. It helps me feel a little less lonely.

Strongly agree with jgreen about getting your legal affairs in order with an Eder Law Attorney while you have a chance. Welcome again.

Cami · July 21

https://alzconnected.org/discussion/76606/new-to-this

oh my God reading parts of your post. I thought you were describing My Husband. So many similarities …not all but many. He is still working part-time and I have been in contact with the boss to be sure it’s OK but I know he has to stop and I’m dreading that battle. One of the things that caught my attention in your post was how there’s no retention whatsoever. I also get the same question five seconds after I’ve already answered it. Where did you get this sweetcorn? I got it at Goodwin‘s stand .ltwo seconds later. ..Where'd you get corn? It’s good.

I wish it was easier. What’s bothers me reading some of these discussions is how everyone feels badly about how they feel . But how can we not feel angry, resentful and sad? . Like you , I look at the other women and I wish he and I could go places together. Thank God, I got to go to Paris in Italy with me before he got diagnosed. The problem now is I am still in good shape at 74 and I wanna go so badly but he does not want me to go and that makes me angry.

i hate what’s coming because I know it’s just gonna get worse but then I think… do I wish for him for him to have a heart attack and drop dead? . At our age we all have something to deal with so it’s not that I’m here crying that it’s not fair to me, but I just hate this. I hate this part of life and I feel so badly that I’m losing him slowly but surely.

vickyportsmouth · July 22

https://alzconnected.org/discussion/76606/new-to-this

This is my first time to really look at and study the website and I'm not sure if I am actually doing this the right way, but I'll take a stab at it because I'm going to need some support along the way. We are new, too, with my DH being diagnosed in December. We decided to try Kisunla and he has had 4 infusions; he's on Eliquis so there is an added concern because of the potential for brain bleed. He did have an episode they labeled after hospital stay and more testing as probably a TIA, but no other real issues to this point. We moved a year ago from 50 years in Clearwater, FL, to Jackson, MS, where I have some family. This was more logical than remaining in FL because our granddaughters the only family in FL and they are just beginning their adult lives, marrying and starting families. Our adult sons are in other states, and we did not want to be there. We didn't have this ALZ diagnosis until several months after we moved. DH is handling this move very well but I am missing our friends and family dreadfully. I have always been the "manager" in our 40 years together and I'm more afraid of passing away before he does and now I'll be burdening my sister and niece with having to manage all our business along with moving him to another state where his son is. I am now wrestling with myself about moving again to settle us with his son before anything happens to me. It is just such a dilemma and so much going through my head I'm afraid I'll ruin my own health because of the worry. It's difficult to talk with my sister or nieces about it because I've always been very independent and a manager. And, really, no one wants to talk about it, including the adult sons. Oh, I just needed to talk for a minute and I apologize for rambling. There are so many of us in this same boat, I suppose and all of us needing to vent. Thank you for listening.

Kweisser · July 22

Welcome Rellie76 and to all.

Yes, I’ve dipped in here a few times here and found it very helpful. DH age 68 next month, probably had it for 7-8 years but it took a lot of effort to get it diagnosed. It runs in his family; his dad, (possible grandfather from description of his behavior), dad’s siblings. Since it was determined to be early onset the research hospital said he was not a good candidate for Lequembi. Nonetheless we have a regular neurologist who is very responsive, as I send updates when I notice a change in behaviour. Yes, I miss traveling with him - we’ve had some good times. No more overseas, and he responds better to weekend trips. Fortunately the adult kids are nearby. Son takes DH out to dinner if I want to get out with friends (but I only ask quarterly). Daughter has hands full with her young ones, but offers humor and moral support.

Approximately every 6 months I see new behaviors. This week he insisted that our granddaughter is not our granddaughter. And when I told him he had to shower he argued that we did not have any showers, so I walked him in there. Mostly he is tied to me, and very affectionate as he hates to be separated. I am lucky that I still work part time, and am able to hire someone to be with him when I am out. DH doesn’t like it, but I explained it is really for me, so I don’t worry about him. He seems to accept that. I am waiting for the next stages, but talking with friends truly helps the stress level. Good luck to all of us!

whytever · July 23

https://alzconnected.org/discussion/comment/277955#Comment_277955

Hey Cami

It is so hard. I feel bad when I get frustrated, but I know it's because I'm angry that this is happening. I think to myself that this is the beginning of the decline and that I'm grieving the loss of our future together as we now know it. We had big plans together and all I keep foreseeing is having to care for him while I'm suffering watching him decline. We have a big trip coming up and I'm so fearful that he is going to struggle and hence so will I. Just a really crappy disease process. Thanks for sharing!

Cami · July 25

https://alzconnected.org/discussion/comment/278129#Comment_278129

I hope the trip goes ok. I my husband doesn't want to travel again and while I first tried to convince him to go, now I think it would not be good. I would be a wreck.

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