She is the Love of My Life, will she come back for a moment?

DrNani

My DW, first showed signs of mild cog impairment during covid, July of 2020. Sill very mild what everyone thought was stress related. Then in 2/2022 we both were infected with a severe. Case of covid with brain fog, that I have been able to recover from. Not so luck has been my DW, although I have made many efforts since to have her diagnosed, taking her to ER’s at major university hospitals, we still have not received a conclusive diagnosis, for what recently 7/28/24 the neurologist we finally had the appointment to see ( took over two years to get in). The neurologist ordered a new MRI which is still not done, appointment is on 9/6. Yes that far out.

The neurologist was rather surprised when he did his examination. When he turned to me and said this has been going on for almost 15-20 years. I was absolutely insulted and dumbfounded. He told me my DW was already in the severe stages and he had no medications for her? I told him,I need help. I need to sleep. We are struggling to manage our daily lives. Still nothing, I have now begun to look closer to Home for help, which is how I am in this forum.

Had anyone experience rapid decline, so much so that 6 months ago a mild case to a severe 24/7 care? She is loosing more and more every day. Out dog died in June, she went down the rabbit hole, and has never recovered. my grief or being in any mood affects her. I am at the point of just pretending I am good and happy, when feels so wrong when she was my best friend and rock, now I feel so isolated and alone. We had dozens of friends who would call and visit,on a weekly basis,now the phone never rings from anyone? Since the pandemic. It’s been a lonely time.

She has the worst feeling and needs to use the toilet every 45mim to hour, she’s isn’t eating much, unless I almost threaten her…. She can’t find anything to her left. She takes her shoes off, and puts only one on? She wants to follow me so closely, I literally alomst inure her when I try to cook, or turn around, I am so burnt out, it’s not eve. A question. She also hallucinates now, makes up these games and sees things.

She will only respond when I raise my voice or curse to get her attention. It feels awful. I am hating myself more and more everyday. We never fought or disagreed in the many decades we have had. Now to keep her from being hurt, like opening the car door when we are on a freeway, I have to shout at her. To stop keep it closed, now, it’s so bad I am forced to lock her in the backseat with child safety on.If I am trying go to rest, she bugs me until I do what she needs but, she cannot use her words. It’s baffling because she has life stories she can tell.

She won’t watch tv or read anymore. She just waits staring at me yo entertain or talk about her potty habits. She cannot dress herself. Oh and the toilets have taken a beating with the things she flushes! No she doesn’t have UTI. She has tested 6x. So much more, thank you for reading. Anyone with similar experience with the sudden onset and repaid decline in less than 2 years?

Need help with her to sleep.eat and have an activity she can do. Which is not much at all.

M1

Welcome to the forum. There is a lot in your post of course.

this has been going on for almost 15-20 years

It sounds like perhaps you could have been the "frog in the pot" where things have been getting worse gradually but you didn't realize it until things really started to go downhill. That's true of a lot of dementia, a lot of that 15-20 years was probably change below the surface that didn't become manifest until late in the game. I would imagine that's what the neurologist might have meant.

he had no medications for her? I told him,I need help. I need to sleep. We are struggling to manage our daily lives. 

She is apparently past the point where medications for dementia itself might be effective; the medications are still primitive, so this doesn't surprise me. However, there are medications for behaviors that might help both of you, such as SSRI's and atypical antipsychotics for agitation, aggression, and the hallucinations/delusions. Some neurologists are more willing to prescribe these than others. If yours was not, I wouldn't bother with further followup after the MRI is done and would ask for a referral to a geriatric psychiatrist. They can many times be more helpful than neurologists after diagnosis.

I am at the point of just pretending I am good and happy, when feels so wrong when she was my best friend and rock, now I feel so isolated and alone.

This happens to almost all of us spousal caregivers. Emotional intelligence persists even late into the disease, and yes, she is going to look to you for almost everything. this is called "scaffolding," where the person with dementia becomes completely dependent on their caregivers for both physical and emotional functioning. Unfortunately, you've lost your partner, and cannot expect there to be any reciprocity in the relationship. You may or may not get glimpses of her former self.

She will only respond when I raise my voice or curse to get her attention. It feels awful. 

It is in fact awful, and you will need to learn new ways to communicate. This forum can help with that. It takes practice. But you will quickly learn that your getting upset will only upset her further. It is self-sabotaging to lose your cool. Almost everyone needs outside help caring for someone with advanced demntia, be it that you bring in outside caregivers, take her to a day program, or look at memory care facilities. Are you in the US? if so, your local Alzheimer's Association Chapter will be able to tell you about local resources. If you do not hold power of attorney for her and are concerned about how to pay for memroy care, you should talk to an elder law attorney. about getting the appropriate legal documents in place so that you can act on her behalf and qualify her for Medicaid (again, assuming you are in the US).

It’s baffling because she has life stories she can tell.

Long-term memory persists much more than short-term—kind of "first in, last out" phenomenon. This can be a way to engage her, to ask about her distant past—even though you've heard the stories a thousand times before, she may enjoy telling them.

Anyone with similar experience with the sudden onset and repaid decline in less than 2 years?

Yes, this is more common than you might think. The speed of progression is unpredictable. But if she has been on a rapid downhill course, you can probably expect that this will continue. She is likely to become incontinent, and you should be prepared to deal with that. If you read a lot of threads on this forum, you can learn a lot.

She won’t watch tv or read anymore. She just waits staring at me to entertain

Apathy and loss of executive function are part of the disease. It's not won't, it's "can't." You don't have to entertain her, it's perfectly fine to just let her be. But almost all caregivers need breaks from the dependency, and it sounds like you do, for sure.

You can also call the 24/7 hotline, 1-800-272-3900 and ask to speak to a Care Consultant. they can help you figure out a plan.

White Crane

Welcome to the forum, DrNani. I'm sorry you need to be here but since you do, it is a good place to be. There is lots of help here. M1 has given you some very good advice and information. As to "This has been going on for 15 to 20 years." Looking back, I can see there were warning signs as far back as 17 or 18 years ago. I just didn't recognize them for what they were. Hindsight is always 20/20.

Some things that have helped me are asking for help from our local Area Agency on Aging. It may be called something else where you are. They were able to provide me with respite care so I could get out of the house for a while. The books, "The 36 Hour Day" and "Learning To Speak Alzheimer's" were also good resources. The local Alzheimer's Association was also helpful and had a lot of information on local support.

I know you are hurting and all of this is overwhelming. Alzheimer's is a mean disease and you don't have to try and navigate it alone. We are here for you. Read lots of threads and ask lots of questions. Take some nice deep breaths and know that you are doing your very best to take care of your loved one. Sending you virtual hugs.

Leesee

I'm glad to hear you are having an MRI, you may find out your DW has Vascular Dementia along with Alzheimer's. Your experience is similar to mine. I knew 'something' was wrong 10 years ago when my DH was about 59 years old. I just thought he was being difficult (not the first time LOL!). I was ready to divorce him over his behavior and lack of assistance during a very difficult financial time in our lives. It wasn't until last year at age 68 that we both realized he had declined significantly. He was having difficulty speaking and didn't recognize common sounds like a lawn mower. MRI showed vascular infarcts in the frontal and temporal lobes. Additional blood test was positive for Alzheimer's.

Our Neurologist said ALZ & Vascular are often found together. While Alzheimer's may be a slower decline (depending on age of onset), Vascular dementia, due to the nature of sudden 'silent strokes' and their location in the brain, is seen in steps. Things even-out then suddenly get worse. In addition to the Neurologist my DH also sees a Vascular surgeon.

Please let us know how the MRI goes, I'll be watching for your update.

Quilting brings calm

Did the doctor specifically mean your wife had had it for 15-20 years or did he say that it OFTEN starts developing that early? Either way it’s not usually noticed until it’s developed to a particular point ( known as mild cognitive impairment or stage 3 of 7). Which can last an average of 7 years. Doctiors usually can’t diagnose it for sure until mild dementia or stage 4 because the person can ‘showtime’ during appointments and pass as normal cognitive. A person with Alzheimer’s who can live for 10 years or more after diagnosis. So try not to feel guilty because you didn’t ’diagnose It’ any earlier.

In addition Covid often speeds up dementia even if the Covid doesn’t turn into long Covid. Your wife probably couldn’t clear the brain fog because of the MCI.

There is lots of good Information on all of the supporting someone with dementia subforums here. We are here to support you along with the real life resources others have mentioned .

Iris L.

Read about anosognosia, it will help you to understand more.

Iris

Jeanne C.

I'm sorry you and your wife are dealing with this. My husband also had a rapid decline- 2 years ago I knew something was off, but he could still drive, take care of himself, and hold a conversation. Now he relies on me for everything, barely speaks (just a whispered word or two), and sleeps 16+ hours a day.

You need help - I know you know this. You'll know more after her MRI. Definitely discuss meds to help with her symptoms/behaviors and sleep. Meet with a elder law attorney to get your legal paperwork (like POAs) in order. They will also be an expert in medicaid in your state, which may be able to provide caregivers and other services for her.

Like M1 suggested, call the helpline. And ask questions here - it's a great group who really help each other.

Take care.

SDianeL

so sorry you are going through this. Read the book The 36 Hpir Day to better understand her behaviors. Rapid decline is common in Vascular Dementia. Get a referral to a Geriatric Psychiatrist who is best to monitor medications for her behaviors. Start looking into Memory Care facilities and get her on a waiting list if there is one. Being a 24/7 caregiver is exhausting. You need help now. Look up your County Aging Agency. Call the toll free number listed in the post above to get other resources. Keep us posted.

DrNani

https://alzconnected.org/discussion/comment/220890#Comment_220890

thank you.

DrNani

Thank You all for your comments. I will add, She was often fearful she would get Alzheimer’s. Our Dr tested her in 2018, she had a baseline MRI in 2015 and again in 2018. The results weee normal? Does the neurologist see something different than the radiologist?

I am seeking a new Doctor. One that is close by, Traveling is quite difficult. I have begun to put her in the back seat due to her tendency to open the door while moving. A normal 3 hour trip will take us at least 6-7 because of the constant need to stop to use a restroom.

we do have an APS worker. Who connected me here and I am getting respite care 12 hours total a month, I often loose track of time myself and find myself unable to make calls. Assigning them to others is an overall loosing battle.

She is 73 years old. We were never co-dependent, we have always loved to be together never disagreed, our friends and family saw us as quite a pair. As she had changed especially lately, all our friends and family who have had POA over the bot( of us, have stopped communicating? Mostly as I feel, when poverty strikes, the “love flies out the window”, unless you’re truly loved. I want to add, she also made a HUGE contribution to our Religious community to the tune of every penny we saved in her accounts, it was an accident, but it was shocking a year ago to discover.

So, I will work on POA. I miss her so much, it’s so sad to know she is right here but she really isn’t? I hope our story was the good stuff, this is no way to end the fairytale. We worked so much and so hard, never had the chance to travel. Our plans ceased March of 2020. I say, if I had it to do again, blow the $, love each other and just do it.

Thank you again, hope to learn a lot more…

DrNani

Thank you. Recently connected to the social help in my area,

SDianeL

https://alzconnected.org/discussion/comment/221029#Comment_221029

I saw the title of your post and it hit my heart. I totally understand how you feel. My husband Lonny called me The Love of His Life. He passed August 12th. He wrote this for me to read after he passed. "To my wife, someone special. Thank you dear for sharing life with me. You are one of those people who only pass thru life every now and then." My thoughts and prayers are with you both. She's lucky to have you. ❤️

tboard

https://alzconnected.org/discussion/70448/she-is-the-love-of-my-life-will-she-come-back-for-a-moment

You are not alone. The situation at my house with my DH is similar. His diagnosis of both vascular dementia and Alzheimer's is recent, yet he is already in a later stage. He is getting medication that is supposed to slow it down and if the progression of his disease does slow down he will need more care for a longer period of time. I provide 100% of his care and am also looking into home care or day care. I'll need to pay for it all. I am currently working a few hours each day. The money we saved for retirement will go for his care. I'll likely be working full time well into my 70s.

As for the bathroom that is what brought me to your post today. DH spends a lot of time in the bathroom and gets into all kinds of trouble. I am not an expert at unplugging the toilet.

DrNani

Thank you again, these are so helpful … Oh the darn Bathroom, toilets, flushing things, what the heck is the obsession? I feel so much happier that I am not alone. I swear others are so ignorant, I was / am incredibly ignorant) when it comes to this horrible disease. We call it “ DEMON- CHA”. My DW would have. Never done things she does now. Also, I never thought I would take a career break stepeping down as a CEO,,which has now been more than 15 months. Then there is the spatial or maybe explain to me? She doesn’t seem to know she has a left, how to turn left, where her left foot is? She will walk outside from one area through a walking path, off the path picking up dozens of those stickers, on her feet, socks shoes, then remove her left shoe never to have both shoes on again, then socks, with burs!. We brought our daughter up on white carpet, imagine how strict we were. We are proud of the fact we can keep our floors clean and you could pray on your knees as we had for 5/decades, bring our grandchildren in and let them crawl… Now my DW not only brings thes disgusting burs in, she tracked them in our carpet and floors, with pick them off, ( sprinkle in MY FOOD🤣🥹!) or think it’s food or money’ and not react if our granddaughter tried to eat them. Talk about a Brain Fart, I think between the toilet and the shoes. Ilaaugh at how difficult the little things really are. My DW no longer does anything. She wants to at t8ms, and I try to help her find an ite,? But, if you ask for a drink she will bring me a paper towel. Get upset because I say, no that’s a paper towel. If I tell her walk four steps. turn left.. the fridge is on your left. She won’t ever find it. Until I walk her myself. By then I forgot why we did it? Did you ever experience your LO do the opposite of what you instruct? She looks to me for everything answer and yet if she is yo keep her cloth on. I find her undressed with toilet paper stuffed in many crazy places. Within minutes!

I’ve heard spouses have a high probability to also get AD? Although also 33% of seniors will die from dementia?

I’m not sure if I am allowed to share information about insurance I was able to obtain through _________. Which is a PPO. I was awarded. 12 hours a month which is a welcomed relief through an agency who ill be coming this coming this week. Along with respite hospice who is also giving me help with volunteers to assist housekeeping? Anyways,,this insurance company was able to tell me, I Do now have dementia coverage. With a zero deductible because of the plan I choose. I’d recommend looking into your Medicare plans through the older peoples clubs. You might find a plan that isn’t as expensive as you might think. I’ll update when I get the facts, and have help in place,

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