HI Nelly. My husband of almost 41 years has dementia. I got some great advice from a friend whose husband also had dementia. First, acknowledge your anger. Stand in front of the mirror and say I hate this disease and what it has done to my husband. I know it's not his fault.
Second, your husband's reality is now your reality. In my house, all the clocks are wrong. Night is day, and day is night. I am sometimes the upstairs girl (we live in a one story house. He thinks he's in the house he grew up in, where the bedrooms were upstairs), his high school girlfriend, the lady in the kitchen. Sometimes he knows who I am, but he doesn't agree that we are married. Does it hurt my feelings, and break my heart? Yes it does. But his brain is broken and he's not doing it on purpose.
You treat him kindly, and remember how much you loved him before he got sick.
You can't fix him, it does no good to argue or to try to change his mind. Just agree. If it's really outrageous, I tell him something like, Gee I never thought about it that way.
My husband gets fixated on things. I just bought him his 9th wrist watch,because a catalog got into the house that had a wrist watch ad. I try to limit magazines that have articles that will upset him, as well as TV programs. We don't watch the news because he gets upset. TVLand and Family Entertainment TV have reruns of old TV shows. They keep him occupied and happy, and calm.
No two people suffering dementia will have the same issues, but these are some I'm facing, and you might as well.
Sending you a huge hug because it SUCKS to watch your husband become a stranger.
Helpful Answer (11)
Reply to Maple3044

Just because your husband has dementia, doesn't mean that you necessarily interact with him any differently than you did before the dementia. You still talk with him(even if what he says doesn't always make sense), love on him(give him hugs and kisses)and just spend time with him. He's still in there, and occasionally you will see glimpses of that.
He needs you now more than ever, so please don't let his disease scare you. Educate yourself as much as possible on the disease, and get involved in a local support group if one is available in your area.(you can Google it to find out)
It sounds like you're suffering from depression, so I hope you're being treated by a Dr. for that. If not, please do.
You are fortunate that you live with some family(according to your profile)so let them help you as much as possible. And make sure that you are taking time away, just for yourself to do the things that you enjoy. That will certainly help with your mood and give you strength for the journey.
Many have gone before you on this journey(myself included)and while yes it can be very hard at times, it also has it's great rewards as well.
And trust me when I tell you that there will come a day when you will wish for just one more day to "interact" with your husband. May God bless you and keep you.
Helpful Answer (6)
Reply to funkygrandma59

I too believe you are depressed, overwhelmed, grieving. Please, please get some help. Look for a support group, have an appt with your dr. Acknowledge the loss of your old life; acknowledge the anger you may feel. Take good care of yourself as you are worth being cared for.

Love your husband. Just talk to him or let him talk. Try and visit his world when answering his questions. My dad would get obsessed with money (he was always a penny pincher). He would get upset because he owed people money - my response was that I had already paid the fictional debt. He thought mom was out spending all their money. He asked mom (88) if she was pregnant and asked a family friend (also in her 80s) if she was pregnant. They both told him no as if it were a perfectly normal question to be asked. Let him ramble. Just talk to him and tell him stories from earlier in you life together. Don't ask if he remembers, just tell him stories.

Last of all, find humor where ever you can. You need to smile and have a good laugh. I'm sure at this moment you feel as if you will never smile or laugh again. I wrote recently of an incident with my grandmother and my father (her SIL) and a big misunderstanding between the 2 - unbeknownst to dad. Grandma had dementia and was in a NH. Mom and I went to visit GM and she was so upset (a woman who was rarely ever upset - in fact in all my life while she was alive, I don't think I ever saw her cry). She told us her woes and how dad had wronged her - she stammered around looking for a word then called him "a worm". I suppose the worst thing she could think of calling him (another thing she never did - calling people names). Mom and I took in this information very seriously as it was so serious for her and we did feel bad for her distress. However, we got into the car after the visit - looked at each other - and burst out laughing - we were in no way laughing at GM or dad, but just the situation. I reminded mom of that incident the other day and of course we burst out laughing again. I'm sure GM is up in heaven with dad and also laughing about the situation.

Please find help for yourself. May you be blessed with peace, love and grace.
Helpful Answer (6)
Reply to cweissp

You must feel very sad and depressed and feeling overwhelmed and lonely. Try to relate to your husband in whatever reality he is in at the moment. He won't behave like the husband you knew before his dementia progressed. Trying to make him "fit" his former self will only make you feel sadder and more frustrated.
How would you relate to him if he were a friend or a stranger instead of someone you once knew? Try to engage with him just as he is without specific expectations.
Helpful Answer (5)
Reply to RedVanAnnie

So sorry. Its hard to interact with a person suffering from Dementia. With my Mom it was like her brain jumped from one thing to another. She would ask a question but by the time I went to answer it, her mind was somewhere else. I would get that look like "what are you talking about".

I think one of the first things to go is the ability to reason. Then its processing what you are saying to them. You have to talk slowly and keep your sentences short. No trying to explain something, they can't grasp it. Then it's they lose the ability to show empathy. It is all about them. They become like four year olds wanting it their way.

I had a very hard time talking to my Mom. I chose not to try and hold conversations with her. Sometimes she would just ramble on, really saying nothing. My daughter was great with her. She would come over to do her laundry and sit on Moms bed. Mom would start talking and daughter would answer her. When I asked her how she carried on a conversation she said, I don't. She let Mom take the lead. And it was really, oh neat, thats nice, etc. She may tell Mom how her day went but never expected Mom to actually hold a conversation with her.

When Mom was in the hospital I requested that no doctor or Nurse talk to her about her care. They were to call me because she was not able to make decisions. I walked in to 2 student nurses telling Mom what was going on with her care. Mom was sitting there smiling but I could tell she had no idea what they were telling her. I said to the girls "you lost her on the first word". I guess they weren't told Mom suffered from Dementia.
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Reply to JoAnn29
Grandcaravan Jun 12, 2021
Very helpful. Sometimes the answers are under our noses.
Just listen to him and remember the disease is taking his mind a little at a time. He’s confused and doing the best he can.
Helpful Answer (4)
Reply to Phyllis1982

Learn about the type of dementia he has. If he has never been evaluated for dementia, then get him an appointment with his doctor. Do not be surprised if his doctor suggests a referral to a neurologist for evaluation and treatment. Each type of dementia has a different pathway of symptoms and progression.

There are some things all dementia have in common. Primarily, dementia creates gaps in the sufferer's memory. Photo albums with captions can help as reminders. "Music memory" seems to remain longer than other types of memory; play those favorite songs. Focus on what you can enjoy together today. Plan for the days when you can not do it alone - when his care becomes harder to complete or when you are sick or tired. Ask family, friends, members of faith community and/or paid help to step in to lighten your load - regularly.
Helpful Answer (4)
Reply to Taarna

Depending on what kind of Dementia he has and how far along it is.

Does he have Short term? Long term? Dies he still recognize you?
If he no longer recognizes you then you'll have to build up a new relationship as a friend. If he knows who you are then talk about his past if he remembers them if not then talk or do things he use to like and do. Don't get stuck on the don't you remember because if they can't remember. It just frustrates them.
Music is good therapy the music he use to listen to.
See if he can color with you or paint by number.
See if he can play a little cards with your help.
Bup a big size easy kids puzzle and ya'll put it together.
Go outside for some fresh air and sunshine even if he's in a wheel.
Go have a Pic nic at the park.
Start a little flower garden in a raised box to make it easy for him to full with.
Tare a drive to the Beach and feed the Sea Guls.

Inite an old friend over.

Watch a movie together and gear it to his mind thinking maybe even a Cartoon.
Helpful Answer (3)
Reply to bevthegreat
Grannie9 Jun 15, 2021
Bev, thank you so much for your wonderful ideas. I will try the ones that we haven't tried yet.
I find Maple3044's comment VERY helpful, since it's coming from someone in a similar situation. My mother was very repetitive, so you just kind of have to go with the flow of her thoughts and try gently to redirect the discussion. It doesn't always work, but once in a while it does! I liken it to a record getting stuck on a scratch - sometimes a little nudge will get it to move on! Also like a record, the topics can change every few minutes - most songs are short, maybe 2 minutes! Even more like records, the songs/memories are OLD!!! Mom was focused on a sale flyer in her hand during one visit. She kept referring back to the shoes she liked, stating that and "They're only $20!" As long as the flyer was in her hand, I could not get the "needle" to move forward.

Clearly Maple3044 has figured out when in time her husband is "living." Depending on what would pop into mom's head, I figured out she was living her life about 40+ years ago. Initially it was asking to go see her mother, gone 40+ years ago. Forgetting the condo and focusing on the previous home only went back about 25 years, BUT we/they lived there a long long time, so it fits into the "when." Another "conversation" referenced my cousin's second child, referring to her as THAT baby (there was a form of MD in the family, on her dad's side. Poor "baby" was totally disabled by it.) THAT baby would have been about 40yo, born between the birth of my two kids. She still knew me, as I would have been an adult at that time. She couldn't remember my kids, YB's kids, because they weren't old enough (she might have vague recollections of them as kids, but not as adults. She thought my daughter was one of her cousins.) It is important to try to determine "when" they are living, so chatting can focus on that time frame. Trying to talk about current issues doesn't work well.

Some people can "go with the flow" of the meandering river of dementia. Whatever memory or thought happens to pop up, that's where the river is at the moment! I recall a MC staff member telling a different family member to try to "be in the moment" with their LO.

I live alone with cats, so I have the issue with one sided conversations... I have to carry on both sides! So, when I do get out and about or have to make/take a phone call, I can talk someone's ear off! Making up for lost time!!! Anyone doing care for someone alone NEEDS an outlet - some ME time with other people. You can learn to "go with the flow" and let the LO "drive" the "conversation", but you also need to have REAL communication with others! If you can hire someone to stay with your LO for a few hours, have at least one outing/week, to get with others. Otherwise you become isolated and will feel lost after your care-giving ends. You NEED to maintain contact with the outside world.

As for how to talk with him, let him take the lead most of the time. Listen. Don't correct or argue with his odd thoughts or wrong memories. It is what it is, just go with it. If you can figure out where in his life he is, it will give you more to chat about. Old friends, relatives, places, etc. Sometimes it is even "made up" memories - things that never really happened, but are oh so real to them! Just acknowledge it and try to move on.

It has to be especially tough when it's a spouse (or other LO) and you are more or less isolated with them. My mother didn't live with me, so I'd only have to deal with "conversations" when I visited. FWIW, some people can't handle any of this. My OB went ONCE for a short visit while he was in the area and refused to go back again. He "didn't know what to do with her." Just be there. Let them ramble on, nod, smile, gentle touches, kisses, hugs, hand holding, whatever they accept, go for it.

Reread Maple3044's comment - some good advice/suggestions!
Helpful Answer (3)
Reply to disgustedtoo
Grannie9 Jun 12, 2021
My husband also has dementia (vascular) diagnosed five years ago. He has become worse over the past year with the pandemic. He is easy to care for. He is usually happy wherever his mind has gone to. He does not remember our children or grandchildren. I wonder if he really knows who I am. I'm just always here. Life has become very lonely. He has great difficulty speaking. The brilliant man I'm married to is no longer here! We do puzzles, look at pictures, etc every day, but I'm not sure how much that helps. I have hired a woman through a care agency to come for four hours on Monday and Friday. I look forward to those uninterrupted hours. My children live close by and are very supportive, but they all live busy lives and I don't want to burden them. Getting a little help has helped me. Dementia is a terrible disease. I know it will get worse. My husband can still do quite a few things for himself---bathing, toileting, feeding, dressing. He tries to help with small chores around the house. Compared to what I've seen in others, I am grateful for what he can still do. This is my first time on this site and I guess I'm just venting. This seems like a wonderful place to make a connection with others in a similar situation. Thank you for "listening."
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I would imagine the answer includes “with great difficulty”. I also expect the answer depends on your expectations. Is the interaction with the husband who shared your life and should know your history? Or with this new husband lost to dementia but who might be good company if you don’t confuse him with the man he was?
If you can separate them, perhaps you won’t feel so lost. You may have to mourn the loss of your best friend, your confidante, your go to person and discover what this new husband is all about.
You may find it easier to expect little so you can enjoy the rare lucid moments as special short lived visits and not feel lost when the visit ends. You may need a new confidante/ally when he’s not able to visit you. Perhaps it would help to channel the conversations you desire into letters to him (that he’ll never read) because it gives you a place to put all your thoughts and sort them out. It could include what you think/know/expect he’d have said if you had had the conversation before the dementia. Writing tends to bring forth recollection.
You likely have to accept that it’s okay to feel differently about this stranger who replaced your husband.
Please know that these are just thoughts to consider and it’s easy to make suggestions when I don’t have to bear the pain you’re going through.
I wish you a path to find yourself and to find peace.
Helpful Answer (3)
Reply to Erikka

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