Caregiver for spouse with MCI (Mild cognitive impairment)

Posted by birdhouseclosed @birdhouseclosed, May 23, 2018

Need help accepting this and dealing with what is to come.

@rmftucker

Janeejane, I think you are on to something with the Neuro Psych test. My husband was diagnosed with Alzheimer's Disease with vascular dementia about three years ago. We have a good VA clinic locally and when I voiced some concerns about inappropriate decisions he had made, they suggested he be seen by a psychologist and helped set up the appointment. Before his appointment, I wrote down everything that I was concerned with and rather than trying to tell her in front of him, I just handed her the paper as we arrived and she was able to use my comments to help diagnose his problems. Since one of the things was his having a couple falls where he would black out for just a few minutes. She told him he shouldn't be driving as these might happen while he was driving, and he accepted it from her. Never tried to drive again. Really took a load off me as I had been dreading that for a while. I hope you will receive help and keep contacting us here at Connect. We are with you.

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rmftucker, Thank you for your reply. I have tried the passing of problems to one counselor. She read it to my husband when the three of us met. Not the sharpest knife in the drawer. That was our last visit with her. I have not been back to a psychologist since! Sounds like you have a good VA. I tried to get my husband to a psychiatrist in the VA. Our out of the system doctor and VA social worker were not successful! I do have a signed Hippa form, financial POA signed by my husband and Will in place. Our doc tiptoes around my husband as far as his diagnosis. I believe my best bet is his Mayo doctor and now have a plan to contact him prior to our next visit. I am afraid to put anything in writing after our experience with the last counselor, with good reason. No one understands what the caregiver is going through except the caregiver. I am a retired RN with many years of experience. It makes no difference Scott, Everyone is different. Boy, chicken, rice and veggies for breakfast and lunch sounds nasty. Add some chocolate m and m’s and things would have been much better!!

Thanks to both of you for your suggestions. Any other ideas, I am open to anything! My husband spends time on the computer and playing backgammon on his phone. He lost his phone recently and bought a new one. He did not have his information transferred from old phone and only has a few numbers on it… only one of our three kids. I suggested we take it to phone store to get his info out of the clouds. He only gets mad at me. He calls himself an “idiot” when he messes up… a word I would never use. Be well.

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@janeejane

rmftucker, Thank you for your reply. I have tried the passing of problems to one counselor. She read it to my husband when the three of us met. Not the sharpest knife in the drawer. That was our last visit with her. I have not been back to a psychologist since! Sounds like you have a good VA. I tried to get my husband to a psychiatrist in the VA. Our out of the system doctor and VA social worker were not successful! I do have a signed Hippa form, financial POA signed by my husband and Will in place. Our doc tiptoes around my husband as far as his diagnosis. I believe my best bet is his Mayo doctor and now have a plan to contact him prior to our next visit. I am afraid to put anything in writing after our experience with the last counselor, with good reason. No one understands what the caregiver is going through except the caregiver. I am a retired RN with many years of experience. It makes no difference Scott, Everyone is different. Boy, chicken, rice and veggies for breakfast and lunch sounds nasty. Add some chocolate m and m’s and things would have been much better!!

Thanks to both of you for your suggestions. Any other ideas, I am open to anything! My husband spends time on the computer and playing backgammon on his phone. He lost his phone recently and bought a new one. He did not have his information transferred from old phone and only has a few numbers on it… only one of our three kids. I suggested we take it to phone store to get his info out of the clouds. He only gets mad at me. He calls himself an “idiot” when he messes up… a word I would never use. Be well.

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Most in this discussion say that no one can understand the plight of a caregiver unless he has been there. That may well be true. But as one who has not (yet) been there, these stories do fill me with fear, almost a physical fear. I think it is actually possible to imagine the difficulty, sadness, and even rage at being in this situation. I, for one, can easily believe that people think of suicide. It must challenge even religious faith. While I have written this, I would also say– there are no words.

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@janeejane

rmftucker, Thank you for your reply. I have tried the passing of problems to one counselor. She read it to my husband when the three of us met. Not the sharpest knife in the drawer. That was our last visit with her. I have not been back to a psychologist since! Sounds like you have a good VA. I tried to get my husband to a psychiatrist in the VA. Our out of the system doctor and VA social worker were not successful! I do have a signed Hippa form, financial POA signed by my husband and Will in place. Our doc tiptoes around my husband as far as his diagnosis. I believe my best bet is his Mayo doctor and now have a plan to contact him prior to our next visit. I am afraid to put anything in writing after our experience with the last counselor, with good reason. No one understands what the caregiver is going through except the caregiver. I am a retired RN with many years of experience. It makes no difference Scott, Everyone is different. Boy, chicken, rice and veggies for breakfast and lunch sounds nasty. Add some chocolate m and m’s and things would have been much better!!

Thanks to both of you for your suggestions. Any other ideas, I am open to anything! My husband spends time on the computer and playing backgammon on his phone. He lost his phone recently and bought a new one. He did not have his information transferred from old phone and only has a few numbers on it… only one of our three kids. I suggested we take it to phone store to get his info out of the clouds. He only gets mad at me. He calls himself an “idiot” when he messes up… a word I would never use. Be well.

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it is like you know me @janeejane You were spot on — except it was peanut M&Ms! Honest!

I know every doctor is different, but the doctors I worked with at Mayo never betrayed a confidence and conversation I had regarding some of the more brutal aspects of my wife's condition, etc. Plus her neuro doc was a master at having her 'need' to go to a neighboring room for a weigh-in, etc. so he and I could talk face-to-face.

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@jshdma

Most in this discussion say that no one can understand the plight of a caregiver unless he has been there. That may well be true. But as one who has not (yet) been there, these stories do fill me with fear, almost a physical fear. I think it is actually possible to imagine the difficulty, sadness, and even rage at being in this situation. I, for one, can easily believe that people think of suicide. It must challenge even religious faith. While I have written this, I would also say– there are no words.

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Your words are powerful, @jshdma Caregiving can be frightening, but it is also one of those assignments you are all of a sudden put into and so you act and react as best you can. you are also correct that it is an immense rollercoaster of emotions! The saving grace for me was my love for my wife, which carried me through many a difficult day, week, or month. In that regard I was lucky!

Liked by Lisa Lucier

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@janeejane

Bingo Scott. My husband is to have a neuro psych test before his next appt at Mayo. I will ask his doctor about a driving test before his appt and let the doctor be the bad guy. I will also ask him about paying bills before the appt. so the doctor can address the bills with my husband. Then keep his doctor here as the good guy. I guess it is one big game.

Thank you Scott. Peace and love to you.

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Hi! My husband has dementia-like symtoms from viral encephalitis. He began having driving issues before the encephalitis was diagnosed. He was always misplacing things, so I said his keys were lost. After diagnosis at Mayo, he was told not to drive, but didn’t remember it. His neurologist here suggested driving tests at a nearby hospital. He also failed the tests.
As to getting physical, he doubled up his fist once and I got mad at him and told him if he ever raised his hand to me again, I would call the police! That may not be something you can say to your husband, but you may want to let your local police know his diagnosis before you might need to call them. I would also tell his doctors about him being physical with you. In addition, I think you should see about guardianship. In our case, my husband did sign power of attorney, in case he needed my help explaining things to the doctors. Do what you can to keep yourself safe (if not sane all of the time, lol) and to be able to have his doctors talk to you. The list of concerns is a good way to inform any of his doctors!

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I have learned many new things in being a Caregiver to my husband, "Semaja" James Bruce. Sometimes I feel Resentment since we just married 5 years ago. I am 70's old and he is 77 yrs.. I met my husband 10 years ago. I actually thought I would live my senior years alone. When we met I felt this was a G-D sent. I never thought I would be in this situation as his Caregiver, at such a young age of 70.
I keep prayers of Patience and Understanding. I don't fight because I don't want to make him wrong. I just stay positive attitude, as much as possible.

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Feeling Blessed and Greatful! We got married for our grandchild. They were so excited to see Granny marry Semaja!

DSC_0232

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@arlenephoto

Feeling Blessed and Greatful! We got married for our grandchild. They were so excited to see Granny marry Semaja!

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Lovely picture!

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@IndianaScott

it is like you know me @janeejane You were spot on — except it was peanut M&Ms! Honest!

I know every doctor is different, but the doctors I worked with at Mayo never betrayed a confidence and conversation I had regarding some of the more brutal aspects of my wife's condition, etc. Plus her neuro doc was a master at having her 'need' to go to a neighboring room for a weigh-in, etc. so he and I could talk face-to-face.

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Liked by James E Bruce

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I may know you Scott. I am a former Hoosier and IU grad. I actually took nurse medication to caregivers when I was doing Home Health… always peanut M and M’s.

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@IndianaScott

Hello @birdhouseclosed Nice to e-meet you here on Mayo Connect! I am Scott and I am sorry to read of your spouse's healthcare journey. I am guessing by MCI you are referring to Mild Cognitive Impairment. If not I am sorry for the wrong guess — and I know what they say about assuming 🙂

The caregiving journey is never an easy path, but one we often find ourselves on with little warning and even less training for it. I was my wife's primary caregiver for 14+ years and a secondary caregiver for my mother-in-law, when she had dementia.

One of the best aspects, at least to me, of Connect is what a sharing community we are! While each patient's journey with their disease is unique, as is the journey of their caregiver, there is much to be gain by looking for, and asking about, hints, tips, and ideas for how to navigate the world as a caregiver.

Acceptance of seeing our loved one with a chronic, fatal disease is very difficult and for me was a very 'up and down' thing. Accepting at times, dang mad at others, depressed for some of the time, and always confusing! I wish there was a magic potion for this aspect of caregiving, but I never found it. That said, the one thing I always tried to do was remind myself, as the times got more challenging and my wife's condition deteriorated, that I was dealing with what the disease was doing to her, not what she wanted to do, say, act, etc. I also kept an old pillow in another room where I frequently would cry into it, punch it, and at time even swear at it with quite a bit of gusto!

Please feel free to ask any questions as their are loads of helpful folks here! If I may ask, how long have you been caregiving? What do you find the most challenging about this new role?

Strength, courage, and peace!

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We just found out my husband has mci. It is very emotional for me right now. I watched his Mom decline for years w the dementia.
I’m on a roller coaster of emotions right now.
Any advice?

Liked by jodeej

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@jimmyj1216

We just found out my husband has mci. It is very emotional for me right now. I watched his Mom decline for years w the dementia.
I’m on a roller coaster of emotions right now.
Any advice?

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Hello. I am so sorry to read this and it brings back a lot of memories for me. When my mom got MCI, I didn't know the first thing about that or Alzheimer's and there really wasn't much information out there. Now there is a lot and my advice is to start learning all you can. Pace yourself and give yourself breaks. I have lots of good information on my website called A New Path for Mom. I have videos, articles and blogs. Go to the very beginning of my blogs and read how confused I was! You will need help and advice, and a lot of time to do things just for you. This Mayo Clinic Connect is a good place for support and I'm glad you found it! Take care, Virginia (www.anewpathformom.com)

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@jimmyj1216

We just found out my husband has mci. It is very emotional for me right now. I watched his Mom decline for years w the dementia.
I’m on a roller coaster of emotions right now.
Any advice?

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@jimmyj1216 I'm so sorry to hear about your husband. I'm on the same rollercoaster as you. My husband was officially diagnosed with early onset Alzheimer's last fall. Both my mom and brother passed from it. It is a long and scary road to travel. This is a great place to find support.
Blessings,
JoDee

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One day at a time! We are over 10 years into an MCI diagnosis and it does get progressively worse, but I have learned not to have any expectations, then I’m not hurt or disappointed. Don’t argue about something. He really cannot remember. If he says he doesn’t need his meds because he already took them, I just back off, wait a few minutes, offer them again, and he usually doesn’t question it the next time.
We live very in the moment. So we enjoy the moments. It doesn’t matter that he can’t remember which team is our team, just enjoy the game.
My husband is a very intelligent professional engineer. He was our handyman, but can’t do sequential tasks any more. Sometimes I can google a problem, I follow the instructions and he contributes the manpower. For other things I just have to call a repairman.
He has become very dependent on me and doesn’t like me to be out of sight. So far, I have not had any help, but may have to do that soon, just to get a break.
He still dresses himself, but would wear the same thing every day if I didn’t intervene. Sometimes I hide what he’s already worn several times. 😜
I am blessed that he still loves me and he still loves Jesus. What more could ask?

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@pattyinal

One day at a time! We are over 10 years into an MCI diagnosis and it does get progressively worse, but I have learned not to have any expectations, then I’m not hurt or disappointed. Don’t argue about something. He really cannot remember. If he says he doesn’t need his meds because he already took them, I just back off, wait a few minutes, offer them again, and he usually doesn’t question it the next time.
We live very in the moment. So we enjoy the moments. It doesn’t matter that he can’t remember which team is our team, just enjoy the game.
My husband is a very intelligent professional engineer. He was our handyman, but can’t do sequential tasks any more. Sometimes I can google a problem, I follow the instructions and he contributes the manpower. For other things I just have to call a repairman.
He has become very dependent on me and doesn’t like me to be out of sight. So far, I have not had any help, but may have to do that soon, just to get a break.
He still dresses himself, but would wear the same thing every day if I didn’t intervene. Sometimes I hide what he’s already worn several times. 😜
I am blessed that he still loves me and he still loves Jesus. What more could ask?

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@pattyinal you described my life. My husband is still able to be home alone and can still drive, thankfully, (He is having a driving assessment next week) but remembering to take his meds and to eat is our struggle.

What is it with dementia and cleanliness? Getting him to shower and wear clean clothes on a regular basis is a challenge. He may put on clean clothes one day, but not shower. Another day he may shower but put the dirty clothes back on again. On other days he sees no reason to do either. I'm at a loss.

Thank God he still remembers our family and loves us all dearly. He may not always put dishes away in the correct spot or remember the names of things it animals, but he still finds joy in so much. I cherish those moments.

Blessings,
JoDee

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