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.

Interested in more discussions like this? Go to the Caregivers: Dementia group.

My husband is a Sudden Cardiac Arrest Survivor of 14 years. He was in neuro rehab for 1 month then outpatient rehab for at least 6 months. Everyone kept telling us how lucky we were to have my husband “back.” He has never been “back.” A once loving successful man, he was hired and 3 months later fired from a professional job. Fired from four volunteer jobs, insisted on taking over our finances which I agreed to, except taxes. Diagnosed 3 years ago with MCI. Now post anoxic dementia. Does not accept diagnosis, have tried multiple counselors who only made him angry. I am the sole caregiver with children who support me from a distance. I am finding my usually happy self becoming seriously depressed. I have no idea what to do. Lawyer says go to court and take over finances… easier said then done. Find it hard to have the energy to connect with friends. Please help. I have considered suicide but do not want to lay this on our children so have decided against it.
How do I continue to live with this controlling man, one I no longer know. A man who was once a kind gentleman and good father.

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@janeejane

My husband is a Sudden Cardiac Arrest Survivor of 14 years. He was in neuro rehab for 1 month then outpatient rehab for at least 6 months. Everyone kept telling us how lucky we were to have my husband “back.” He has never been “back.” A once loving successful man, he was hired and 3 months later fired from a professional job. Fired from four volunteer jobs, insisted on taking over our finances which I agreed to, except taxes. Diagnosed 3 years ago with MCI. Now post anoxic dementia. Does not accept diagnosis, have tried multiple counselors who only made him angry. I am the sole caregiver with children who support me from a distance. I am finding my usually happy self becoming seriously depressed. I have no idea what to do. Lawyer says go to court and take over finances… easier said then done. Find it hard to have the energy to connect with friends. Please help. I have considered suicide but do not want to lay this on our children so have decided against it.
How do I continue to live with this controlling man, one I no longer know. A man who was once a kind gentleman and good father.

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Hello @janeejane I am sorry to read of your husband's diagnosis and also of your struggles with the demands and realities of caregiving. I am Scott and while I am happy you found Mayo Connect I immediately suggest you seek help for your suicidal thoughts. While almost every caregiver gets overwhelmed and depressed at times, suicide is something you should seek immediately help for! Either your doctor or a therapist might be of help — or the national suicide help line at 800-273-8255. It is nothing to shrug off for sure!

I know when my wife's disease began to effect her abilities to think rationally I did seek professional advice and did the tough work of getting established as her legal guardian for finances, health care, etc. i think your lawyer is spot on suggesting you need to legally take over your finances since your husband has been diagnosed with dementia.

I also know from my wife's disease progression it is very, very hard when the person we loved is now a truly different person. It makes caregiving even more challenging, but that is often what these darn diseases do … they steal our loved ones away from us leaving us with someone else in their place. I used to tell our children I was only married once, but was married to two women.

Superheros only live in the comic books, so there is no way caregivers can do everything all the time, no matter who much we may want to!

Have you looked into a care facility for your husband?

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@IndianaScott

Hello @janeejane I am sorry to read of your husband's diagnosis and also of your struggles with the demands and realities of caregiving. I am Scott and while I am happy you found Mayo Connect I immediately suggest you seek help for your suicidal thoughts. While almost every caregiver gets overwhelmed and depressed at times, suicide is something you should seek immediately help for! Either your doctor or a therapist might be of help — or the national suicide help line at 800-273-8255. It is nothing to shrug off for sure!

I know when my wife's disease began to effect her abilities to think rationally I did seek professional advice and did the tough work of getting established as her legal guardian for finances, health care, etc. i think your lawyer is spot on suggesting you need to legally take over your finances since your husband has been diagnosed with dementia.

I also know from my wife's disease progression it is very, very hard when the person we loved is now a truly different person. It makes caregiving even more challenging, but that is often what these darn diseases do … they steal our loved ones away from us leaving us with someone else in their place. I used to tell our children I was only married once, but was married to two women.

Superheros only live in the comic books, so there is no way caregivers can do everything all the time, no matter who much we may want to!

Have you looked into a care facility for your husband?

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Thank you for your response Scott. I feel I am passed the suicidal thoughts. Thank you for your concern.

My husband has experienced two nights of sundowners when he became physical with me. Scared me. I talked to both of his doctors. This is not my husband. I do not know who this man is. Other times he can be so sweet. In the beginning I felt only anger towards him. Now I am feeling empathy. I go back and forth. I feel the doctors need to confront him head on but they seem to gently walk around his diagnosis… never using MCI or dementia… only with me! I understand you feeling you had two wives. In the middle of this, I took my wedding ring and had it redone for the second husband. Now I am on my third. He no longer can fly, play golf and all but one of his friends are gone. One of his old golf buddies takes him to lunch once a month. I am certain it is a one sided conversation…. old war stories from my husband who is a high ranking retired military officer. He is afraid to give up control, I am at times afraid of him physically, we need to move into a smaller home, my husband cannot and will not accept change. I don’t think he is ready for inpatient or even day care.

I guess I am asking for some guidance. When does he stop driving and who is to tell him, why am I expected to cook for him to keep his weight up when I am fighting weight gain, why does the VA not have anything to offer for his condion… “only traumatic brain and alzheimers; he does not fit in any of our groups.” He is 100 per cent disabled. What comes next? No wonder our VA is a one star and we no longer go there. His doctor would not meet with me due to HIPPA?? I told her I only wanted her to listen. That is not breaking HIPPA rules!

I know you do not have answers for me, Scott. I have to figure this out myself but it sure feels good putting it out there.

His SCA was the day after he turned 57. I was 55. We were fortunate in that we did a lot of traveling with his work and my work. We are fortunate in that we have a secure monthly income. But if he keeps giving money away, we won’t be so secure. I hate him and yet love him for who he was, all at the same time.

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@janeejane

Thank you for your response Scott. I feel I am passed the suicidal thoughts. Thank you for your concern.

My husband has experienced two nights of sundowners when he became physical with me. Scared me. I talked to both of his doctors. This is not my husband. I do not know who this man is. Other times he can be so sweet. In the beginning I felt only anger towards him. Now I am feeling empathy. I go back and forth. I feel the doctors need to confront him head on but they seem to gently walk around his diagnosis… never using MCI or dementia… only with me! I understand you feeling you had two wives. In the middle of this, I took my wedding ring and had it redone for the second husband. Now I am on my third. He no longer can fly, play golf and all but one of his friends are gone. One of his old golf buddies takes him to lunch once a month. I am certain it is a one sided conversation…. old war stories from my husband who is a high ranking retired military officer. He is afraid to give up control, I am at times afraid of him physically, we need to move into a smaller home, my husband cannot and will not accept change. I don’t think he is ready for inpatient or even day care.

I guess I am asking for some guidance. When does he stop driving and who is to tell him, why am I expected to cook for him to keep his weight up when I am fighting weight gain, why does the VA not have anything to offer for his condion… “only traumatic brain and alzheimers; he does not fit in any of our groups.” He is 100 per cent disabled. What comes next? No wonder our VA is a one star and we no longer go there. His doctor would not meet with me due to HIPPA?? I told her I only wanted her to listen. That is not breaking HIPPA rules!

I know you do not have answers for me, Scott. I have to figure this out myself but it sure feels good putting it out there.

His SCA was the day after he turned 57. I was 55. We were fortunate in that we did a lot of traveling with his work and my work. We are fortunate in that we have a secure monthly income. But if he keeps giving money away, we won’t be so secure. I hate him and yet love him for who he was, all at the same time.

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Hi again @janeejane I agree there are so very many complications when it comes to the daily life of caregivers! Big things, small things, and everything in-between. It is often this aspect of caregiving that goes unnoticed by most non-caregivers if you ask me.

'Putting it out there' is HUGE, janeejane! HUGE! I cannot tell you how often I would talk to myself in the mirror just to hear some things aloud and to just get it out of my insides! It is a large part of what I was seeking when I discovered Connect.

I can only speak from my experiences as a caregiver so these are only my observations and experiences. On driving I told my wife our insurance would not cover her unless she took a driving test that (in our case) was administered by Mayo. It was electronic and she failed. Her doctor was the one to give her the news and she accepted it. It was incredibly sad, but necessary. In my MIL's case they waited far too long and someone saw her driving on the sidewalk rather than the street and called the cops — thankfully!

Food was an issue for my wife and I as well. In her case she only ate one meal — broiled chicken breast, steamed veggies, and white rice. Every day — for over 14 years! I had the same trouble with trying to get her to eat more and I needed to eat less (still do)! I would give us equal portions and then keep a small bag under my napkin into which I slipped half my food as I could. Ate those leftovers for my breakfast the next day. Ahh, the things we do for love!

I would strongly encourage you to try and get your husband to sign a HIPPA form for you! I convienced my wife to do this first because we wanted her neuro-oncologist to share reports, etc. with her GP. Then we suggested 'while we are at it, just in case we'd ever need it' to add me and our adult children. This was huge as the years went by and especially our adult children were able to get information on thier mother's condition direct from the doctor (so it was exactly what I was hearing) plus it often took the burden off me to have to spend time relaying info I got from the doctors.

My wife was 49 when she got her diagnosis. We, too, were lucky that we did a huge amount together early in our lives and didn't wait for the so called 'golden years' of retirement. We were frequently criticized for doing this, especially by my family, but those are now some of our family's favorite memories and proved we were correct in our choices at that time.

I have not had any experience with the VA, but I recall others have posted here about VA care so hopefully they will chime in here for you too!

I saw my relationship with my wife as if I was living each day through a kaleidoscope. Always changing, never the same from moment to moment, day to day, but always filled with something new, different, sometimes fun, and often challenging!

I send you strength, courage, and peace!

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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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@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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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

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.

REPLY
@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!

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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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