My frustration, confusion and sadness

trottingalong

I rarely comment, but read posts often. 6-7 years ago my DH was diagnosed with possible MCI which was inconclusive. I can tell you, he will never go through testing again. He’s very aware of his memory and confusion. He says he “feels perpetually confused.” Dementia is rampant in his family. Mother, aunts, two brothers, grandfather. He has been almost in the same place for years (feeling foggy). In the past year though, he and I have both noticed a change. He feels it, I see it. I dislike looking at stages because they all blur over each other. It isn’t linear. What signs we see as a spouse and the person experiencing his thought processes not working correctly, is noticed long before not being able to drive or losing words. I cannot get the medical profession to recognize what I see and what he feels, so we just charter our own path. Thanks to all of you who post on here, I have learned to be tolerant and understanding. The short term memory is really affecting him as well as electronics (how does the remote work?). He needs me more and more for everything. I run the show around here, financial, emotional and everything pertaining to owning a home. I’m it. I shadow him. He still can carry on a conversation and his humor and wit are in tact. His ability to comprehend is shrinking. I’m in the process of getting a durable power of attorney. He agrees we need to get it done. When myself or him speak to friends or family about his failing mind, we are dismissed. It’s well meaning, I know. But I want one person to ask me a question, because I have been on a roller coaster for years questioning whether he has it or not. He would go through periods of complete clarity and then losing it. Now it’s become more commonly consistent. He’s 79, I’m 66. I’m sad, I’m overwhelmed (sometimes) but I’m driven to do everything to make his quality of life good. I really just needed to vent tonight because I so want to see my aging mother, grandchildren and children, but we live 7 hours away from everyone. In other words, feeling sorry for myself. It doesn’t happen often, I’m a strong person, but tonight it hit me. Thanks for any of you who took the time to read this.

Denise1847

Dear Trottingalong,

I am so sorry that you are going through this. It is so frustrating not be heard. It sounds like you may need to get another doctor who respects what you are saying. We had a doctor who dismissed my husband's cognitive decline for 2 years. I finally had enough and changed physicians, and he immediately ordered an MRI and did a mini mental, which showed the decline.

Maybe you could take your DH on a road trip with an overnight stay half way through your journey. I know it is difficult to travel with a person with dementia, but please consider that you need to maintain some joy in your life and it sounds like visiting your family members would help you.

Keep hanging out with this group as you will learn alot and it will be a great support to you.

SDianeL

https://alzconnected.org/discussion/65502/my-frustration-confusion-and-sadness

I know exactly how you feel. 5 years ago I noticed changes in my DH but thought it was his age. He's 78. I'm 75. The last 3 years due to COVID we were together more & I realized there was a problem. He couldn't spell easy words anymore & misplaced items constantly. He was obsessive about things. He literally organized the trash. It took months to get him tested. He was diagnosed about 2 years ago. My brother-in-law told me to get the DPOA & so glad I went right away. My husband can no longer sign his name. I needed the DPOA to rent an apartment, sell our RV & buy a new car. The last trip we went on together was hell. So travel is out. Going from being active to staying home is very difficult. Feels like prison some days. He also has trouble with the remote & the guide on the TV. Last night he went into the closet thinking it was the bathroom. He was having an episode and said something fell on the floor. Like he was hallucinating or sleep walking. He also knows he has a problem and said the next morning "there wasn't anything was there" I cried. We can't go out to eat. He gets overwhelmed with the noise and the menu. He goes with me to run errands because I can't leave him alone. He can't use a phone anymore so we got an alert button in case something happens to me. I do have caregiver one afternoon a week so I could get my doctor's appointment caught up. I also am committed to making his quality of life good. I am sad that soon I will need to ask the doctor to prescribe medication to calm him down but I don't want him to be a zombie. He's just so angry. I know how you feel. I feel cheated. I'm exhausted mentally & physically. I'm also a very strong person but some days reach my breaking point, then regroup and find the strength to carry on. I believe he would do the same for me. Most people don't understand what the caregiver of someone with dementia or Alzheimer's goes through. People here do.

trottingalong

thank you for both comments, I appreciate the response. Not quite sure how to use this site yet. My husbands stress level increases so much when I mention going somewhere outside of where we live. Driving two hours is too much. SdianeL, we have a lot of similarities. My DH isn’t quite as advanced, but he does so much of what you describe. Like you, some days I do need to regroup. I do this by taking a walk on the beach or spending some time with my horse. My DH rarely gets mad. He does laugh a lot, but tends to focus negatively on various things. It’s a crappy journey we are on.

denise1847, thank you for your suggestions. I do feel we have a good doctor. My DH is quite adept at laughing and joking and covering up his confusion. I answer most questions for him and he just laughs and says I’m his memory.

nancyj194

Dear Trottingalong,

I am so sorry to hear what you are going through. It is a difficult road to be on.

Like you, I tried for a few years to get our long time PCP to do something about what I was seeing with my husband's mental confusion. It went nowhere until one day we were in the office and my husband could not carry on a conversation with the doctor. The shocked doctor gave us a referral to the university for testing.

A few weeks later, we had our 2-hour long appointment with a diagnosis of Alzheimer's. We followed up with a brain MRI and some other tests.

If you have a university fairly close, that specializes in Alzheimer's, it would, it might be worth your time to go there for testing. You will probably need a referral from your primary care doctor.

I remember after the testing was over and we went to the cafeteria for lunch, I cried. It was now a reality, where before it was my thoughts and concerns.

As you move through this maze of uncertainty, would it be possible to move closer to your family?

I know moves are difficult for those with Alzheimer's and dementia, but if your family is close and able to be there for you, it might help.

Please take care.

jfkoc

The journey is overwhelming at worst ....hard at best.

This group knows what it is like and is always here !!!!

-Judith

PookieBlue

Trotting Along and Diane and other caregivers

My heart goes out to all of you. Living in a world of tears and fears where you no longer have your person is heart wrenching. We carry this world on our shoulders alone. We suffer daily losses only knowing that more losses will follow. We take on all the responsibility for another person’s life and happiness at the expense of our own. Only others in the same boat can truly understand. My DH has really slipped this week, 77 years old, increased difficulty walking and struggling to find words. I just realized he hasn’t asked me too many redundant questions in past few days. I’m almost too overwhelmed to finish the paperwork for Day Care. My head is spinning. However, there is a light at the end of this tunnel. We do what we have to do because no one can do it better than we. We all know what is best for us and our situation. May The Lord bless us, comfort us and help us through the light.

Jeanne C.

Trottingalong - My heart goes out to you. This disease is brutal for both patients and caregivers. A few weeks ago a friend said to me, "he's not as bad as I expected" as if I have been exaggerating. I wanted to explain cognitive reserve and showtiming as if I had to defend my opinion. I wanted to cry and tell her about the hours of being yelled at for taking away driving privileges and generally ruining his life. I wanted to explain the panic when the useless neuro said that she couldn't help him if he doesn't want treatment. I wanted to say "tell me how bad it is when it's your husband." But I smiled and said, "he's having a good day."

We all do the best we can to make it as good as possible for our partners. You're doing great.

trottingalong

Jeanne C. That made me sad for you. I often feel myself that I’m the one exaggerating because he’s good at covering when he sees someone for a short time. He lost our dog today, found her, brought her home, left the house and thought he lost her again. I was 15 minutes away when he called and said he had lost her. My biggest fear to date. Thank goodness she is home safe and we were able to talk about it. Take care.

Jeanne C.

trottingalong - thanks but I'm OK. I was just trying to show how people really don't get it, even the medical professionals, because they only see a snapshot of what we see. I may have gotten a little emotional in making the point 🙄. That same friend was over today and my DH was all over the place: emotional, losing words, confused, anxious. As she left she said, "I didn't know." I don't want sympathy or even help from her (just the chance to catch up with a friend and feel normal for a bit), but I selfishly felt a little vindicated.

I'm glad you have your dog home safe.

[Deleted User]

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trottingalong

Victoria2020. We did the living trust a few years ago and I’ve always been the financial person during our marriage. I will be calling the attorney tomorrow to get an appt. For the POA.

Jeanne C. I had to snicker when you said you felt vindicated. I can completely understand that and relate to it.

nancyj194. We live in a remote area of Northern California, 7+ hours away from Portland, where he already went through extensive testing 6-7 years ago. We won’t go for more testing. We are both well aware of what he has, I cared for his mother during her journey. At this time we would not choose to live closer to either child. This is our wonderful dream home. It’s our peace. He would not handle a move at this point in time, this is where he wants to be. To be honest I would not either. Thank goodness for technology where we can chat via video.

AnderK

Man oh man. This all strikes home so closely. We have all the right papers signed, but when we signed them all, it was with the assumption he would end his final days with a physical terminal disease ( heart failure, return of prostate cancer, diabetes, etc) that would allow us to be partners through most of it. Not dementia.

We are only a short time into this journey, but today, among other heartbreaking things, he asked if my brothers and SILs had ever seen or been in our home that we have lived in together for over 23 years. Seems to be diminishing before my eyes. But at least the drs seem to have moved from MCI to mild dementia. Mild dementia only seems to be a euphemism for " it ain't as bad as it's going to get".

When talking with people with whom I don't want to bare my soul, I generally say:

With this set of diseases, you never know who is coming to the party.

Sorry, got a little carried away tonight, we just got the assumption of mild dementia on Friday after trying to rally health care to our assistance since last fall. and started arecept today. I am 72. He is 75. We are life partners not married folk. Will share more, but my bones are weary and my heart is sick tonight.

RCT

trottingalong….I can soooo relate to you…my husband got diagnosed in 2018 and he is 81..I am 67….we stopped RVing in 2019 and since then I have been “it”. It has taken time for me to make so many adjustments. Most people see a snapshot and I see the whole picture. It can be challenging for sure. Ed too has his humor and wit but short term memory is gone and comprehension is diminishing. We are all human and doing the best we can…be kind to yourself! Caregiving can be frustrating and rewarding all in the same day! We are here for you! Blessings

annie51

I can relate to so many of the comments here and am sorry we are all going through this. My DH is 75, I am 65. We have no children and no immediate family close by. Our world is getting smaller as I have a hard time leaving him alone since he forgets where I am and gets upset or angry. He comes with me everywhere. I try so hard to come up with things to do to fill up the days since he can't do much. Can't work the remote so I have to set up movies, etc. for him. I have felt all the emotions others have mentioned and have tried so very hard to become the strong person I need to be - I need to stop getting irritated and using the wrong tone of voice. I am not happy with how I've been handling this but I'm getting better day by day. Reading these posts is helping tremendously! Thank you all for your candid discussions.

PookieBlue

Annie, Everything you said is exactly how it is in my world. Since I know how tragic the progression of this disease can be, I just take the wins when I can. Everyday is a learning experience and you will continue to get better at this.

annie51

Thanks PookieBlue for the encouragement and my thoughts are with you all as well. So happy to have found this forum!

Sailor girl

Dear Trottingalong,

Your story brings back so much pain and also courage from my journey. My Husband was 14 years older, and it was never an issue...until the wicked disease started taking him away.

If there was any good news to our age gap, I was young enough to handle most of the situations.

From my experience, however, I just want to encourage others to find help long before they think they need it!

I took a vastly unique path, and recently returned to this group. I posted under "Returning to share information." I think we all would do just about anything imaginable to find a place and people that will make life better for both the person with dementia and the caregiver.

You are not alone.

ElaineD

Dear Trottingalong,

We're bit behind you, but every day brings us closer.

Fortunately I was able talk with him about medications that he needs a neurologist to prescribe. He asked his PCP for a referral. He has an appointment in November with a neurologist who is part of large memory clinic at Duke University Medical Center.

His PCP also ordered: CT BRAIN WITHOUT CONTRAST, right away. The scan showed: Global volume loss without lobar predominance. My DH 's brain is getting smaller! And the scan also showed chronic small vessel ischemic disease, There are mini-strokes throughout his brain,

So this is real and progressive. This is validation of my observance and assessment of him and my knowledge of his serious family history of Vascular Disease.

None of this makes day to day life easier however. More and more he acknowledges that he doesn't remember stuff. I get so frustrated coordinating most of his activities. We live in independent living in a retirement community so all of this is a bit easier.

AND I have a progressive neurological condition, cannot walk, need help dressing, use a power chair. My DH is MY CARETAKER. I won't be able to help HIM when he needs help. We will both have to move to assisted living. But the day to day unfolding of our lives is a huge challenge.

I know there are so many who are dealing with the tragedy of dementia in a family member. I cling to every word written by those who share. The details, the coping strategies, and the sorrow.

Tomorrow is our 61st wedding anniversary. We have shared a wonderful life. Most of it he doesn't really remember, alas.

I will lose the one person who knows everything about me, who has been my love and my comfort. And I'm already losing him.

Love and strength, Elaine

ButterflyWings

Showtiming is a real thing. That "adept at laughing and joking and covering up" real problems. Yep. My DH was "overcompensating" for a long time, is how his diagnosing physician described it. It is a natural human thing. We all do it. Put our best foot forward especially with strangers, definitely if being tested or evaluated. We "perform" to the best of our ability including faking it 'til we make it. Covering for ourselves (and sometimes others) without even giving it a second thought. Heck, society even teaches us to do that, right?

It's just that with dementias it seems to contribute to a lot of denial for those who can't or won't see -- and even refusal for some in the med community to properly diagnose and to believe caregivers sooner. So it may be intended to protect undiagnosed PWDs rights and independence, but my DH suffered longer than he needed to and we ended up with lots of harm being done (to both of us, financially etc.) because a. there is not nearly enough education and awareness of the real signs of potential dementia and b., he had high cognitive reserves and social skills, so others tend to see what they want to see. Some didn't see anything wrong. Others perceived more than they let on about him being compromised, and took advantage.

I hope your journey is less rocky than some. We are here to help each other, and it really is a blessing.

Smilescountry

You are right. This is a difficult journey, and it is hard when not everyone sees the changes. It is my dad who has Alzheimer's, but my mother also has mild cognitive decline that is beginning to progress. I am glad that you are taking care of legal things. My parents did that 23 years ago with a very reputable attorney and for that I am glad. However, one of my sisters passed away a year ago, and my parents left another sister off the POA list because she was living out of state at the time. When we went back to get things updated, Dad was not competent to agree to any changes, so I am his POA and HCR. If something happens to me, my sister who was on the original list is. My mother was the first in line, but the doctor said that she should not be making major financial or medical decisions at this time. One of the best things that I did was to get a letter from the doctor for each of my parents stating that they could no longer make their own decisions. I have it stored digitally on my computer and share it whenever I have to use the information from the 23-year-old POA and HCR forms. The attorney was able to write a new will for Mom, and we got around some other difficult areas by making sure that all their finances had the beneficiaries properly listed. For Mom, all three of us sisters are equal, but separate POAs and HCRs. For Social Security purposes and for some other purposes, I am the sole POA (Representative Payee) unless something should happen to me, but now we have a plan in place, which is important. One of my sons said to my husband and me the other day, "Are you learning from this and organizing your own affairs?" I had, but not completely. Now, I try to organize a bit every day. What I do for my parents I try to do for my husband and myself so that my children will not have to go through so much. With all the other difficult things going on with my parents, I am so glad that the legal and financial parts are now settled!

Iris L.

True, there is not nearly enough education and awareness of the real signs of potential dementia. A professional who is knowledgeable about dementia should be able to assess beneath what is unpleasantly called showtiming.

Iris

M1

Belated happy anniversary Elaine. Butterfly Wings, i am so glad you are back, i have missed your thoughtful input. Appreciate everyone here, it does help to know we are not going through this alone. Hang in there everyone....

serenity62

I feel like I have unlocked hidden treasure tonight. Thank you all for your honest, familiar stories! I just retired at age 62 to take care of my 67 y/o husband, "officially" diagnosed with ALZ just 7 months ago. Had cognitive, social and emotional changes for about 4 years prior + increased alcohol use, (should have been another clue but missed it). He remained highly functional despite it all so I kept living in my bubble of denial. Now the rubber has met the road and I feel so sad, angry and terrified. I don't know diddly about the lawn, the snowblower or fixing things that break. One of our sons helps us out but gets very frustrated with his dad. I am often defending the very person that I just got short with for pushing the wrong buttons on the remote again or for standing in the middle of the kitchen when I am trying to cook. It's so hard some days just to keep my sanity, let alone my serenity, but I want to try to figure this out better so I don't self-destruct. Already losing too much sleep. Thank you again. Your stories give me hope and make me feel like I'm not alone on this island.