Sad, Mad and Exhausted Husband

kjaymes · August 1

My 66 year old DW has been confirmed to have mild dementia through FAST testing and a pTau 217 blood test. This diagnosis was given to us approximately 2 weeks ago. She does not remember any testing and is in denial. Up until 3-4 weeks ago, my wife's symptoms were pretty mild (forgetfulness, asking same questions multiple times, etc. for 3-4 years), she was even still driving. She was given the diagnosis of MCI. But now, things are suddenly much worse!!

She wakes up early in the morning filling garbage bags with contents from her bedroom drawers and closets stating she needs to go home. Right now, my downstairs living room is filled with bags, and right this moment as I type she's packing to go home!

When 4-5pm hits, I am no longer her husband, but instead someone she dislikes very much! She will walk over to the neighbors looking for me, or call me on the phone while I am sitting right here in our home. She tells me I need to leave on a nightly basis. After 33 years of marriage, this is very painful.

She thinks she still has kids (our kids are grown) and her mother is still alive (deceased 25+ years). She continually states she needs to go pick them up and heads to the car (keys are hidden and license has been suspended). Because my wife 5'-10" tall, 200 lbs and physically fit, I cannot and will not physically hold her back.

I'm sad because she is so young 66 and I am only 63. I just buried my mom last year from dementia (96 years old), whom I supported for 8-10 years, 3-4 hours a day after work (I'm exhausted!).

I'm mad because we do not deserve this (no one does!). We both had successful careers, saved our money and planned on our best lives together (travel, golf and whatever we wanted to do)……and here we are.

Also, mad (this may seem selfish) because does my joy of life also end at 63!!?? I love golf, I love socializing, I love life! This might be easier to take if we weren't so young (late 70's, late 80's), not easy, but easier.

Is my role going to be "the caregiver" for the next 8-10 years or more!…or will my health diminish from the stress and I go before my DW!

I am exhausted ! I don't know what to do! I have attended a few support groups. The kids (3), whom all work full time jobs are starting to help when possible, and I've reached out to her memory doctor who has prescribed her with 5 grams of Buspirone 3 times a day. Does not seem to be helping.

I consider myself to be very strong man, physically, emotional and spiritually, but this is really taking a toll on me and I am not sure how much of this on a daily basis I can endure.

Thanks for letting me share. Grateful for any suggestions.

dayn2nite2 · August 1

Because these new symptoms are so recent, has she been tested to see if she has a UTI?

H1235 · August 1

It’s my understanding that buspirone is pretty mild as far as anxiety medication goes. I have found that doctors want to start with the mildest medications and dose first and only increase if necessary (it makes sense). It sounds like it might be necessary to find a stronger medication for her. I would talk with her doctor. I agree that testing for a uti might also be a good idea. I have always considered myself emotionally strong but my mom’s diagnosis has caused me so much stress and anxiety. I finally gave in and talked with my doctor about medication for myself. I’m glad I did. I was prescribed buspirone for myself. It is very very mild. It’s tough with my mom, but I can’t even imagine how difficult it would be if my husband were diagnosed (his mom had Alzheimer’s). So sorry you are going through this.

Groovy's Girl · August 1

I go to a dementia support group twice a month in our town. This has helped immensely..and I've gotten many good ideas from them. I also got myself some respite care 5 days a week. to get out of the house. The one lady who comes has a lot of experience with dementia and was a former nurse and she has encouraged me…there's nothing I can do but my best. And that's ALL I can do. My DH is 6 feet tall and 180 pounds. I am changing him, and keeping him clean, fed, and safe. There is NOTHING else I can do…he's a toddler.

I joined a program though Medicare called GUIDE and I get support from that. ( Go to ceresti.com to sign up) I would like to suggest that you call the doctor and let him know that you need a different Rx…that one doesn't work. Then, I suggest seeing if there's someone you can connect with in your support group…someone who knows what you're talking about and who can listen to you.

kjaymes · August 1

https://alzconnected.org/discussion/comment/278890#Comment_278890

She states she has no symptoms, but I have requested to her doctor she be tested.

Robert1320 · August 1

Your local Council on Aging can be of valuable assistance.

Visit ncoa.org for more information.

H1235 · August 1

https://alzconnected.org/discussion/comment/278899#Comment_278899

Uti symptoms don’t always present in the typical way with dementia patients. For some increased confusion or anxiety are the only symptoms.

jgreen · August 1

Dear @kjaymes

From what symtoms you describe It sounds like your DW is more in the moderate (or 4-5) stage. I will attach another tool to help you compare the behaviors you are seeing with a better idea of where she may be in the disease progress.

Dementia Behavioral Assessment.pdf

Anosogosia is a term for your DW not recognizing or understanding she has dementia. She is not being stubborn or in denial, she just cannot think clearly enough anymore.

I agree with the others, the Buspirone is not enough for DW at this stage. It does not help with the agitation, hallucinations, etc. Who diagnosed your DW? Are you seeing a neurologist, or better yet a neuropsychologist? Hopefully there is a health professional who can step in and manage medications to bring you and your wife some comfort and relief.

Do have her checked for UTI as @dayn2nite2 suggested. And let the provider know she has had a sudden change in behavior that is very different from her ‘baseline’.

kjaymes · August 2

https://alzconnected.org/discussion/comment/278912#Comment_278912

Wow! Thanks for the information. Didn't realize there so many stages! My wife seems to be in 3-4 stage, with a few stage 5 tendencies. Wife is being diagnosed by a memory doctor (geriatrician). We have another appointment with her next week.

Thanks again

dcare45 · August 2

My DW is stage 6. The earlier stages seemed to have her acting out much more then she does now. We eventually got on Sarequel to help with the anxiety and such. I would certainly ask for a med review at the docs.

I sympathize with you. It sounds like you have already been through a lot. No, I don't think you are being selfish wondering about your future. After your experience with your mother, I am sure you know what is coming. Please try to find some time to do the things you enjoy when you can.

Arrowhead · August 2

My wife was the same way at your wife's age, almost 6 years ago. Not only was she often packing to "go home", but she also constantly tried to go there. I fought that for over two years. Three years ago, I put her in memory care. In spite of all the aggravation she put me through back then, there are times I would gladly swap now for then.

Jgirl57 · August 2

If it is not a UTI ( needs a culture test) then as jgreen stated, she could be way past MCI and further along to stage 4-5. The packing to go home is a very frustrating and exhausting phase for sure . I’m so sorry you had to go thru this with your mom and now your DW. Mad, sad, exhausted —yup!

jgreen · August 2

https://alzconnected.org/discussion/comment/278955#Comment_278955

Hi @kjaymes If DW has some behaviors in stage 5, then she is stage 5. You go with the highest stage whether there is one or more behaviors you are observing. Let the geriatrician know the behaviors to give them as complete a picture as possible.

I hope all goes well and you can get DW on some meds that will help her and you. Take care.

H1235 · August 2

https://alzconnected.org/discussion/comment/278955#Comment_278955

Usually someone is considered to be in the last stage they have symptoms for. So if you are seeing symptoms in stage 5 she would be concerned stage 5. There may be some symptoms she never experiences. Some here have said their loved one recognized them up to the very end. I think it’s just a way to give you some kind of idea on where your loved one is at and unfortunately what ugliness might be coming your way. Someone mentioned anosognosia above. I will add a few links.

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

https://iona.org/therapeutic-fibs-ok/

Teepa snow has some great stuff on YouTube.

https://teepasnow.com/blog/how-to-calm-a-person-living-with-dementia-who-is-wanting-to-go-home/

Rellie76 · August 2

https://alzconnected.org/discussion/76716/sad-mad-and-exhausted-husband

You are not alone in grieving for the life you expected to have and worked hard to get. It sucks. Do your best. Its all you can do! Hang in there and come here as often as needed!

Lethe · August 5

I agree this sounds further along than MCI. One thing I have realized is that the caregiver is also going through their own stages with this horrid disease. You are relatively new to this so of course you wonder how you will manage and must you sacrifice your own goals/life. Give yourself some grace and time to figure it out. Little by little you begin to realize what you can cope with and what you can’t. Find your supports and don’t be afraid to ask for help.
You will begin to learn what is nonnegotiable in keeping your own sanity. Things like walks, a support group, meditation or whatever it is for you. Don’t give up what recharges your spirit. Don’t loose yourself in the caregiving. Easier said than done I know. You will get support and excellent advice here.

kjaymes · August 6

https://alzconnected.org/discussion/76716/sad-mad-and-exhausted-husband

Ok. UTI was negative. Wife seems to be getting worse by the day. 3 months ago she'd forget who I was for a hot second, then correct herself. This last week, she is waking up not knowing who I am and not liking me. Immediately jumping out of bed in a crisis. This morning it was she needed to get to her mother's funeral to our granddaughter is very sick and she needs to get there right away. The anxiety is obvious. Sometimes she even starts hyperventilating. This is really stressing me out. I have always been the type of person who focuses on the solution rather than the problem. This situation seems to not have any solutions! The problem just gets worse. Her medical doctor prescribed with escitalopram and donepezil over a year ago. Now, the memory doctor has prescribed her with buspirone (3 weeks now) and abilfy (3rd day). She is currently taking all (4) medications daily. Looking at a "Dementia Stage Assessment Form" that was given to me by a nice gentleman on this forum, looks like she may be stage 4. Do these symptoms change over time? I can deal with the forgetfulness, and most of the other symptoms (I think), but the hostility when she doesn't recognize me and the anxiety she exhibits is emotionally hard to endure.

One good note is that I am noticing her morning anxiety and hallucinations are lasting for shorter period of time than previously (maybe the latter meds are working). She still enters a midday and evening episode.

I bought some concert tickets for tonight, months ago. This morning I decided to place them for sell. Then after my wife's episode, my wife came over to me, hugged me and said she wanted to go. I removed from the tickets from the "Sell" platform. Let's hope she is mind-healthy enough to go later this afternoon/ evening.

I guess what I'm trying to say is I'm having a really hard time being stressed all day not knowing what the next moment brings.

Thanks for listening