New to the forum; not sure what’s ahead

AlzWife2023

Dear friends, my husband is 80…I’m in my 50s. We’ve been married for 30+ years. He seems to have Alzheimer’s according to GP. He seems to be stage 4 or 5 based on my reading. It’s hard to tell. We’re still waiting to see the neurologist. He’s not aware of his memory problems. He forgets what he’s just done (like feeding the dog) and forgets who is in the house, where they went, where we’re going—all day long; repeats same comments & questions all day. He also gets completely lost in conversations & we all (me & 3 adult children) have stopped expecting normal conversations. We remain patient and positive, but he’s in his own world. I quit my job b/c we were afraid to leave him alone. He doesn’t wander, but he keeps letting the puppy out in an unfenced area where there are foxes, etc & the doctor said he can’t be responsible for anyone (or dog) and he can’t drive because he could forget where he’s going. 

He’s been like this for a long time, but we only just started acknowledging as a family that it’s not just his quiet, stubborn personality coupled with getting old. He won’t prepare & eat real food (just cake/bread). I cook for him & that’s fine, but when I worked I realized he wouldn’t eat all day. He absolutely won’t take his pills unless I give them. Two years ago I discovered that he had stopped taking his pills for months. He clearly had just forgotten about them altogether, but he pretended it was a conscious choice. He won’t shower unless I pressure him. He won’t wear his hearing aids unless I bring them to him. He yells at me about the hearing aids & the showering and gets all weird when I give him his pills (this has been true for years). He behaves better when my oldest son is here so he’s moved in with us recently. 

On his mini mental, he did the math with a little help and knew his location…he did not know who was president before Biden & could not repeat any of the words. He could not interpret the parable. He gets obsessed with things like feeding or walking the dog. He tries to take the dog out all the time, even right after we’ve returned from a walk, but I won’t let him b/c the dog pulls and he will fall and/or let go of the leash … so it’s dangerous for them both. I have to watch like a hawk b/c he’s quiet and he’ll just open the gate to let the dog “free.” 

So that’s the situation for now. I’d like to know what stage this sounds like to you all & what could be coming down the pike. He’s continent, knows his family, & does some chores around the house. He does not fuss much about me or the kids taking over driving & chores, etc. He seems to not care or notice. He doesn’t really ask why I’m not working anymore or why our oldest son is living here. I’m giving this context hoping for some insight based on your experiences.

I look forward to the support of this community. What should I expect at this point? Thank you.

AlzWife2023

Married for 30+ years! Typo!

Ed1937

Hi Justine, and welcome to the forum. It is a good one, and you'll get a lot of help and understanding here. But I'm sorry you need it.

I'm giving you an excellent link so you can better understand dementia. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

It's hard to say exactly what stage he is in, but judging from what you wrote, I'm guessing maybe stage 5. If he were to sign a contract, would he realize what he was signing? The reason I ask is because if you haven't seen a CELA (certified elder law attorney), you really need to see one ASAP to get your legal papers in order, including POAs as needed or possible. He/she can also help you protect a lot of assets, and help you understand Medicaid, which could be in his future. You need to make the call ASAP.

If you have any other questions, post them. Someone will respond. In fact you will likely get several replies.

gampiano

Hello,

Although I joined the sight awhile ago, I've just begun to actually participate. My husband is at about stage 6, I would say. He has a lot of the characteristics that you describe. When he was first diagnosed, at the height of the COVID pandemic, he was still able and willing to do a few chores, yard work, etc. Now, 18 months later, he is not  capable of completing a task unless I monitor.

He recognizes our  family by facial identity, but he can't tell you their names or how they are related to us. He sometimes thinks i'm his mother, but calls me "hon". He could tell you my name with  a lot of prompting. I work part time from home, so this has helped us to keep a stable routine for the most part. 

He began "leaking" as the doctor calls it about a year ago, and i've switched to disposable pull ups now.Sometimes he gives me a hard time about changing before bed. I used to get upset about this, but now, I will gently ask him to please help me with this. That usually works, but if I see that he is becoming agitated I just leave him alone. As much as I know this will mean more work for me in the morning, it's a trade off. I've chosen peace instead of confrontation. he rarely changes into pjs for bed, but his day attire is casual and comfortable so,,,, I let it go.

Medication used to be a problem, but now, in the morning at breakfast, I take a vitamin or 2, and I put his meds in from of him, and we do this together. He mirrors me, and it works, Also, with brushing teeth. we do this right after breakfast, at the table . he spits into a bowl or paper plate, and I brush my teeth at the same time. this works well so far.Sometimes the ALZ patient will mirror your prompts. 

About the dog.....I had the same issues, he would just leave the door open and the dog would run out. The animal control officer had to return our guy in a van from the sheriff's department. what a nightmare. Is there an area that you could fence in so that the dog would be safe if your husband let him out? Also, at stage 6, I would not let my DH walk the dog by himself. 

I have found that starting the day with soothing music playing in the background is very helpful. Also, in the afternoons, we have a playlist of songs that we loved when we were dating, etc. He loves this, and it puts a happy spin on things even on days that are not sunny.(we live in New England).

You are fortunate to have your son living with you. Take advantage of his presence and escape from the house when you can. I feel like a prisoner here, although I can still leave for a few hours if I stay close to home.

Oh... about diet... You might notice that your husband craves sweets and junk food. We had a healthy diet here for years, lots of fresh veggies, etc. But my husband has gone back to preferring the foods he was raised on when he was a kid in the fifties. this is maddening , but i've let this go too. So, he picks at the salad, but grabs the coffee cake. He's not starving. Hydration is more important so lots of water or whatever he likes to drink.

I hope this helps you in some way. This forum has a lot of info, you will learn a lot. Take care of yourself.

. 

storycrafter

Hi Justine. Sometimes it takes a while to acknowledge what's happening right before our eyes, esepcially for family. It can be so hard to face the decline in our loved ones. At first we may hope it's just something temporary. But when we accept the fact of the matter it really helps. It gives us the opportunity to make choices that ease the way forward in a difficult situation.

You said, "He does not fuss much about me or the kids taking over driving & chores, etc. He seems to not care or notice."  I'm reminded that apathy and loss of initiative were a couple of the first symptoms in my husband's illness. It's a common part of dementia.

In our case it went along with a marked loss of affect/feelings/expression/empathy, which reflected in his face/eyes. For my husband, some of that returned when he started certain medications. Even a smidgen of regained empathy was worth the connection it allows in a marriage.

These changes can be simple to say or read about, but they have far-reaching and profound effects on our relationships. I hope the empathy and support you'll find here will be helpful to you. I've found it a lifesaver for many years (my husband's progression of FTD is slow).

The medical system only provides medication - for which I'm very grateful because it has given my dh some quality of life. And I can certainly say that it's only here, through the generous sharing of those in the trenches, that I've learned the useful, practical strategies, and important ways to prepare and survive the challenging journey.

I've gained the equivalent of a PHD by reading these pages over the years. It's greatly enhanced my own quality of life and mental health. I believe even a medical professional could earn a PHD by reading the information found here. In my opinion it should be required reading for every doctor and nurse (I've had to educate some professionals with what I learned here, in order to get a diagnosis and correct medication for my spouse!).

I hope you'll keep reading and writing/asking questions/sharing your experience as you find the support you need on this journey. You are not alone. Best wishes and good luck to you.

TheMonck

Hi.Your posting encouraged me.What we face with our loved one is differant

and the same for all of us.Just dont feel that any of it is your fault.And you

decide when it becomes too much of a burden to care for him.Remember 

you need to stay active for your own health of mind.

AlzWife2023

Dear Ed, Thank you for your reply. I have been thinking for a while that it is time to do this & your message takes the sting out of it--knowing everyone on here is going through the same challenges. Thank you again for your message. It has helped me feel less scared.

AlzWife2023

Dear giampiano, Your message was extremely generous and kind. Although we are all in sad and difficult situations, it made me happy to know we are here to support each other. Thank you for sharing your experiences and for your very good advice. I was so relieved and comforted to read your words, to know I am not alone. I hope that you can get more time for yourself. Sadly, I think feeling trapped is par for the course. I am very lucky to have help. I forget to take breaks and your encouragement to take advantage of the help I have is vey good advice. I wish you & your husband the very best. Your message means a lot to me. Thank you!

AlzWife2023

Dear storycrafter, I felt the sentiments that you expressed immediately upon posting and reading our fellow caregivers' wonderful replies. Thank you for your message. It is very kind and comforting. 

Apathy is a huge issue--thanks for putting your finger on it--and I suspect he has had this symptom for at least 5-10 years. It's crazy b/c I had thought he just stopped caring, but I look back and think he may have been in early stage Alz for a very long time. 

I am so glad that meds have helped your husband. Even if they've only helped a little, every little bit counts. We are holding on to the people we love. I am very frustrated that our GP did not give a complete diagnosis and sent us packing (with no advice) to the neurologist whose first appointment is June! That will be a six month wait for a specialist's opinion. Originally, they wanted to give us an appointment in September! 

AlzWife2023

Dear TheMonck, I agree that staying active and healthy is super important and easy to forget. I find that I am moving at my husband's snail pace these days to accomodate his rhythm and b/c I'm confined and probably a bit depressed and that's not good! 

Good news is that I took a few days off to visit my daughter and youngest son & my oldest son is home with pop! So I feel good.

Another Day

Justine2023 - I'm so sorry for what you're dealing with, but so glad you found this forum. The people here are all in the same situation you find yourself in. We're all having the same and different daily, weekly, monthly experiences. My DH is undiagnosed still as well. I have hope though. When my DH began displaying some odd behaviors, years ago, I was certain that it was food related or a vitamin deficiency. It took me a long time to realize that it was something more. He is in his late 70's and like you I'm in my 50's. Like your DH, mine doesn't think there are any problems, memory or otherwise, B-U-T he gave up driving on his own about two years ago. He does still help with some chores, currently he's very interested in growing things, like preparing a small garden. Since digging is pretty difficult, I invested in some grow bags, cheap and easy. 

You asked what to expect at this point. I'm no expert, but from my personal experience expect to get used to things changing. Just about the time that you think you've got something working, something will change and you'll become the Queen of Plan B. Eating will change a lot, from not hungry to ravenously hungry and he'll want things he used to love, then he'll want things different. The mood changes throw me off at times. Be careful what you let him have exposure to when watching television, listening to music, people who visit or who he talks to on the phone. We have a person who calls infrequently, and every time he calls DH is upset for days. I tend to miss picking up if I see it's him calling. That's a different story, but the point is, it's OK for you to monitor what is influencing your DH's moods. Music - A friend suggested I try peaceful, calming music. It works! I play it low as a background music and it does have a positive effect. Foods - I try to get my DH to eat as healthy as I can and I aim for serving cold water fish at least twice a week. Research, read everything you can get your hands on so that you know what to expect and what you can do. There is much you can do to try and lessen the severity of what you are dealing with. Think, food, vitamins, supplements, music and influences. 

Last but not least, don't forget to take care of you so you can do what you have to do to take care of your DH.

AlzWife2023

Dear Another Day,

Thank you so much for your message & I apologize for the very late reply. I forgot my password so I could not log-in. 

It’s funny how we have many of the same experiences: my daughter & I were convinced my husband’s behavior was due to vitamin deficiency and dehydration and lack of exercise. He’s now taking supplements and getting P/T and guess what? the symptoms are still here! He’s very reluctant to drink water. 

My husband has stopped brushing his teeth and wearing his dentures. I appreciate the mirroring tip, Another Day. It’s very good.

My husband is very upset by bad vibes (like the recent Murdaugh trial which my daughter and I were following). We learned to not discuss it in front of him so I know what you mean about emotional triggers. 

Thanks to everyone on the forum for posting their experiences, thoughts, questions and advice & for replying. I let out a lot of my crankiness here today, but I’ve since deleted the negative rant. It was therapeutic at the time, but but we ended up having a good day overall and I’m starting to accept and expect that life is a roller coaster with Alzheimer’s and that despite bad moments, caring for my husband is a gift, an extension of our love, and my service to God, humanity, and my children.

I hope you’re all having a relatively good day & staying focused on the positive!