Not new to Alzheimer's but new to it being my wife

AndMaybeADuck

Hi friends.

My wife and I have been together for 10 years - she is 52 and I am 46.

We cared for her father who had Alzheimer's and her mother who had dementia until they each died at home. Through caring for them, we became active in our local Alzheimer's community. After caring for her parents for 5 years, those people are, for the most part, the only ones left in our social circle.

My wife is terrified of Alzheimer's happening to her. She left her wallet in a grocery cart a month ago and cried for hours, stating "It's happening, isn't it?" For a long time, I told her (and myself) that her not remembering little things was because she wasn't paying attention or wasn't actually present during the conversation, but I am seeing more.

She has become mean to me and she was never mean to me; she has become impatient with the little idiosyncrasies of our friends, to the point of not wanting to talk to them; she is easily overwhelmed by a project that has several steps; planning a meal is stressful as timing what to do first and reading recipes overwhelms her; she is hyperfocused on a game on her tablet, playing it all the time and having a toddler-like tantrum when I suggest she stop playing; she doesn't remember doing things like making desserts or buying certain things and will fight me to the death about it; she yells at the dogs all the time; she promises to do this or that around the house and it never happens; boxes from Amazon pile up by the door and mail is put into a huge stacks, never to be looked at (and I better not look at it because that is then me judging her for not doing "her job"); the kitchen sink and counters get full before we can clean them. So many things we saw her parents starting to do before we got her father's official diagnosis.

She had some depression after the deaths of her parents and was on medication for almost one year. I have suggested to her that she might be depressed and she vehemently denies this. I am a therapist, I know what I'm looking at.

There is no way she will go to a neurologist because she is so afraid of it - which is sad because there are interventions that could be implemented earlier - her father was farther along when he was diagnosed, so I guess it was more obvious.

Write not because I need to know what is waiting or to even ask what to do. I write so that I can become part of this community and find support because there is no one near me, age-wise or location-wise. Because my wife denies it, I sometimes hesitate and question what I see. I am sad and scared for our future, I am worried. I feel very alone, unsure who I can talk to.

M1

You can talk to us here, for sure. I am so sorry you are facing this so young. You are right to push for an evaluation, there could be other medical things that need to be ruled out, and you might point out to her that the newer medications may offer benefits that weren't available to her parents, especially if started early. But you should also learn about anosognosia-it's much more than denial, she may be truly unable to perceive the deficits. I wish I had a magic answer about convincing her, but I don't.

You have come to a good place for support.

Jgirl57

So sorry you are here but happy you feel comfortable posting . That’s a big win for you . The beginning stages are so very hard due to the emotional strain and the caregiver realizing that this is indeed happening. When my HWD/Alz says he is going to do a project , I now know he does not know how to start and will never finish so I just nod my head and say “nice”. I had to ignore the harsh words when I started taking over chores he used to perform .It is indeed scary. Learn as much as you can and begin plotting one step at a time how you can take control of the situation. The mail was a big issue for us as well and I just tried to get the mail first when he was not looking and leave the junk stuff for him to sift through.. Now, several years later, he doesn’t even mention the mail. Welcome to the forum.

Sunshine2024

My husband has had a good experience w two drugs. He is early onset and the last six months no change in progression. See if you can get her to talk to her PCP maybe they can talk her into a neuro appt.

ThisLife

Welcome to the forum but so sorry you are here and with a lot of real lived experience. We cared for my FIL, and I now care for my husband. It is different. Please feel free to share here. I am going to share a few suggestions.

Mail - for FIL we got a PO Box and forwarded mail there. Then notified where needed of a change in address. I'm a bit concerned about the Amazon packages but don't know what to suggest. FIL was getting masses of mail with charity request and "you've won a free prize; just send us X dollars." Things not being done or nasty comments when you do it. Develop a thick skin. You do whatever needs to be done. Reply to comments with an upbeat, "Oh I just wanted something to do," or any other innocuous thing. My H is hyper focused on little electronic games. I wouldn't borrow trouble.

CindyBum

You have come to a good place for support.

I was part of the helping support for both my FIL and MIL who suffered from dementia. I agree with ThisLife...it is wildly different caretaking for your spouse. The need for love and understanding from your spouse is so large, it's much harder to get over the insults and lack of caring for you. I spent a long time crying about what I would do without all that love I used to get. It is heartbreaking, though I've found some balance with it a year into really, really knowing what I was seeing is actually dementia and not exhaustion and depression from the loss of my SO's mother. You will find a strength you didn't know you had and an ability to brush off things you didn't know you could brush off.

Know that we are here for you. What you say to us, you might not feel comfortable saying to anyone else. That's ok. We know what you're going through in a way no one else does. I will be eternally grateful to the care and support I've gained from this community.

Ed1937

AndMaybe, welcome to the forum. Sorry you need it. In a way, it's good you have experience, but you probably know everyone is different. You will get a lot of understanding and support here. It's really a great group.

Since I'm not sure if you know this, I'll suggest you see a CELA (certified elder law attorney) soon. They can do a lot for you, and although it might seem expensive, it is almost always worth the cost.

Since you are young, if you should get a diagnosis, you need to apply for Social Security Disability. With a diagnosis, it should be approved pretty quickly.

If your wife does have dementia, you will find that it is a much different ballgame than it was with parents. Anytime you want to share experiences, or ask for suggestions, just post. You will find this is the place to be.

Joydean

Andmaybe welcome to our family. None of us want to be here and yet here we are. I really don’t have any suggestions because you know about this disease. I will agree taking care of a relative is a whole different story than taking care of the love of your life. Words hurt in a whole different way. As Cindy said you’re losing the person you thought would always be by your side. Prayers sent for you and your wife.

SDianeL

Welcome to the place for support and info. I don't know what I would have done without this place. My DH was diagnosed 2 years ago. So sorry about your wife. Something that helped me was to make a list of my husband's behaviors and specific examples of behavior. I sent the list to his PCP and asked for her help in getting him evaluated. Fib if you have to and ask the doctor to back you up. Some examples are that insurance requires a physical. Definitely get a DPOA and medical power of attorney. I'm so glad I did. When my DH balked at going to the doctor I told him the doctor said he had to go. Might not work with your wife, but worth a try. Please keep us posted. Prayers for you both.

harshedbuzz

Hi and welcome.

Can you get her in to see her PCP to test for those conditions that mimic dementia but are treatable? It would be tragic if this change was caused by a mid-life onset of hypothyroidism or a vitamin deficiency that went untreated. My parents and later just mom pushed back on having dad evaluated for a decade-- he had a treatable form of dementia related to alcohol use disorder. Had it been identified sooner when he had the cognition to choose sobriety their quality of life would have been so much better until his Alzheimer's became symptomatic.

HB

Davegrant

Andmaybeaduck,

Welcome to the forum, you begin with a lot of experiences in the dementia area. My wife has Anosognosia, so I also felt alone in dealing with this disease. I started from ground zero in the disease and caregiving. This site has been a huge part of my support group the last seven years. I learned that each case is unique, and each day is different. I also learned that it was me that had to change and the more I learned the better life became for both of us. Since I knew nothing about this disease, I believe that I was good at following the suggestions of others who have gone before and all of them have proven true from my experience. I feel that I am at a plateau, since we recently went for a neuropsychological evaluation, and they believe that my wife is in the later stages of Alzheimer's disease and her cognitive functioning will continue to decline. I will continue to do the one day at a time, one problem at a time. I also learned that each person progresses in this disease uniquely, so I prepare for a future with or without me. My wife is a physically healthy person. I check the site almost every day and ask questions when I am stuck on a problem.

Dave

Howaboutnow

AndMaybeaDuck:

I am very sorry you are facing this. You have seen dementia up-close and have acquired fine-tuned sensors for the behaviors. You know.

Yes, you’ll need to get her seen ASAP, and others have given good suggestions on how to approach that. Have you been able to talk to your contacts within ALZ community you became involved with?

I see your ages, and can relate to the dynamics and challenges of a life not-yet-lived-fully halted so young. No decade is “easier” to deal with this. Yet, your experience will have realities unique to someone your age. It was recently suggested to me to find a support group for early-onset dementia (my DH is not early onset, but I’m an Early-Onset Caregiver 😊 for him. I’ve been in a support group for a few years, which i find helpful or at least cathartic, but I recognize that a group at similar life stages as myself could be even more helpful.

BTW For us, getting a diagnosis relieved some of the anxiety for me…the anxiety caused by wondering if I was going crazy..fear of the unknown and the limbo-land I was living in. The reality of diagnosis for DH was depressing, yes, but at least I KNEW. Then we went on for a few years, disease subtly progressing but manageable, to now not really manageable. This is not a job for ONE.

We are all here for each other. Glad you reached out.