MCI to Dementia: What can I expect in the future?

Hi there. I’m so sorry this is happening for you guys. And one thing that really hits hard to me is how young you guys are as well. It is one thing to have this happening but a COMPLETELY different thing when you are young.
I hope you will feel a sense of peace knowing you aren’t alone. I am new on here and I think it could be beneficial to reach out to young onset folks with illness for sure.
Hope to see you around this site.

Hi @desbabydoll, you've been through many cognitive changes with your husband from traumatic brain injuries to mild cognitive impairment and now what appears to be declining into early onset dementia. You see him every day. It must be hard when family don't see what you do.

Let me ask you about you. How are you doing? Do you have support among friends or professional support?

3 years ago my husband was diagnosed with some brain cell loss, indicating Questionable dementia. He had still been in his career of owning his own CPA Practice. He was still in practice but was much slower and having troubles with numbers where his administrator assistant would find errors and it would take him a longer time to correct them. Therefore he as forced to retire. He continued to assist another CPA and gradually on his own stopped entirely over a 3 year period. During those years I felt a lot of his problems were dues to depression. We both lost our mates to illness and had known each other as couples over 40 years. We both have families. My family accepted his diagnosis but his adult children did not believe their dad had dementia. Over those 3 years some days he seemed fine, i even doubted dementia. What makes his diagnosis seem so bad is the fact I’m in a wheelchair myself. I get around in the home very well but a few things I cannot do for him. He likes to sit in family room during day taking his meals and everything at his chair. There are steps to family room. He is also incontenent meaning even with diapers the bed is wet every day. So as of January this year i had to hire a care person, housekeeper aide. I still can do meals. During these years I struggled emotionally. I have a womens bible study in our home 1x a week during fall and spring. My sisters in Christ as well as My Father God have helped me stay well. Having a husband with any form of mind problems has to be harder on the mate than the patient. I felt betrayed, angry, alone, spent, looking for HELP. Without the support of my family and my sisters in Christ and most of all encouragement from My Father God, I would have been screaming, crying and an angry old lady. I am 89 with a clear mind and my husband will be 90 in November. My son has endured my whinny. It isn’t right he should have to but i am blessed because he does

For a woman who is 89, being a caregiver for your husband, and you being handicapped yourself, is very, very commendable!
I want to offer you my congratulations for the loving care you give your husband, in spite of your handicap and your age.
You are right, God is pouring his blessings upon you and you are using them to be a caregiver for your husband and for you! Just the fact that you have a clear mind at your age is a huge blessing!
I also had a close relative who was always asking me what was wrong with her brother. So, I found a list of his medical problems from a recent visit summary and I sent it to her. She never asked what his problem was again.
It’s not easy for relatives to believe their loved one has a disease because they are not with them day after day, watching the changes going on with him, as we are. Not believing also relieves them of any responsibility to help.
I also commend you for getting help for him and you still making meals.
You are totally devoted to his care and I would like to offer you prayers of thanks for being an excellent role model for all of us caregivers.

Thank you but only by the Grace of God can i care for him. It isn’t me, all praises go to God

I will pray for him and for you. Unless a family member actually lives 24/7 with you and your husband, they will not see his decline and also as someone else has stated, they don’t want to.
The decline may be fast or slow. Everyone is an individual. Enjoy your relationship when you can. One day he may seem normal and the next day he may have no clue as to what is going on. I let my husband do what he felt he could do as long as he desired to. When he no longer had the desire then i took over. Today i have to wake him up or he would probably sleep most of day away. I fix him meals and have to constantly remind him to take another bite.

Yes, of course.
Have you asked anyone in your families what would happen to your husband if you were out of the picture?

No, they feel i do too much for him. Since he has a care giver now for 7 hours, they say Dad has always been self centered and only thinks of himself. They feel he is just being lazy and stubborn.

Do you mean that no one in your family would help him if you were gone? What would happen to him?

My husband 90 yr and myself age 89. He was actually diagnosed with MCI January 2020. But even beginning 2012, I realized something wasn’t right in our marriage. He owned his own CPA business and had a flourishing business for over 50 years but in 2000 his previous wife of over 40 years passed away. I had lost my first husband of 45 years in 2019. Our families had been casual friends for over 40 years. After his wife passed in 2000 he looked me up and we developed a good relationship and so we were married in 2001. As i said in 2012 I noticed he was beginning to spend more time in office and couldn’t be gone on vacation for more than 2 weeks from office. When we married he had sold off most of his office clientele so that he no longer needed an office manager so i had gone to work for him so he would not have to spend long hours in office. I had fallen and needed shoulder surgery with a total shoulder joint repair and no longer able to work in office. That is when he started acting helpless so to replace me he hired my daughter in law. That was fine but she has a family so went into his office just to keep the bookkeeping up and sort the mail and then leave. He began staying in office longer. I mentioned to him it seemed he paid more attention to office than our marriage. He disagreed with me. Then he started complaining about having trouble with his computer needing to call for computer tech help more. Complaining about different companies making him change his password all the time. So many problems with equipment at office continued. In September of 2019 he missed a step up from family room to next level and couldn’t get himself up. I had to call EMT for help. He was taken to emergency room and they did a lot of testing on him but found nothing so was sent home. So he then made appointment with his internist and his doctor did a brain scan MRI blood and urine test. He found a UTI which can cause memory problems so of course that seemed to pacify all of us about his mind but as far as his work in office I and my son and daughter-in-law urged him to retire. He agreed so my son wasn’t working at the time so he practically lifted my husband out of his office chair, moved what needed to be moved out and sold what needed to be sold and everything was out then my son locked door took keys to landlord but then my husband acted as if he still had a business. He was able to do some business in past from home office. I didn’t question him. He had not been sharing his finances with me. When we married he and i both did a prenuptial because of our previous marriages and families. But when he mentioned he had to do payroll, i questioned him. He never liked me to question him and again he said to me “ yes I still need to do it.” If I asked why he would not answer me. He would give me the silent treatment. So as I said in January 2020 his internist doctor ordered him to see a neurologist about his memory problems and the neurologist looked at his brain scan and noted MCI. His family wouldn’t hear of MCI or dementia. “ Oh, dad’s always been like that. And just laugh it off. I was concerned it seemed his was spending money on his business and he no longer had money coming in. From 2020 to today November 2022 he slowly declined and in September 2022 his daughter who has power of Attorney Financial he said she should take over but quickly like almost overnight he remembers nothing about money. So she is trying to find out what his financial worth is because he had run up debts for his business that need to be paid and he had let household bills lapse as well. All the time seeming to be aware of all his bills. Like i said he did not share his finances with me. I did get him to allow me to be about to have my name on his personal bank account and then i did get him to allow me access to a couple of his credit cards. So now that he can’t take care of his home, i can have access to paying his mortgage and household accounts. I had sold my home and he paid for his home bills as he said he’d have to pay for them if I didn’t live here. I bought any foods we ate. So we me having access to his personal account and his daughter power of Attorney together we are trying to pice together what outstanding bills and what monthly bills plus what auto pay accounts he had out there. It is a mess. If his family, his COA friend had listened to me and some how tried to convince, urge my husband to allow them information about his business, it might have helped him rethink all the money he put into his business he no longer had. Now he barely has enough money to keep him home going. He did take out LTC insurance and so i have hired some in home care. He has also been incontenent urine in 2019 continues and now bowel movement as well. He is sleeping about 18 hour out of 24 hr. Taking in very little food or water.