How to treat someone in the early stages of dementia with respect?

My husband w dementia is very gradually going downhill. He doesn't know what he has. Why say it just makes them feel bad. I've learned not to comment or correct. Saves him getting aggravated & causes no arguments. Change the subject or redirect. Our daughter said pretend your dealing w a 6 yr old. He lately doesn't know we are married. (59 yrs) Forgets names & seems to not understand what grandkids are linked to. I sometimes explain it as the wire in your brain is loosing its connection & because I'm younger mine is still connected so just ask me anything you want to know. My trust in Gods promise to always be with me is a great help.

I don't know enough to give specific advice; but i have read enough that I believe legal advice is imperative for couples to protect their money when one spouse may need intensive care. I care for my mother's finances and am so glad that her nursing home steered me toward an attorney.

marys....you are far braver than I am. My husband is in complete denial that he has dementia (Lewy Body disease variety). He thinks he can take care of himself. Yet he does nothing for himself because I'm here and I'll do it because that's my job...I"m just a woman and a wife and that's what we're for.

Phrase it in the form of a question. If you put these here would that work? If its a question and you include you in the question, men take it better.

That's right, Mary. It is very difficult when depression or discouragement sets in. BUT: we must talk to ourselves, or listen to the small voice that wants our attention. Maybe laughter motivates better?
Put post it notes throughout the house that read 'SMILE', 'BREATHE', 'MOVE',
I don't care how miserable things are, there is always something to laugh at--even if it is oneself:))) Watch Pink Panther movies, Jack Nicholson, Bill Murray! OMG!!!

I agree ChristinaW you have to make it a priority in your life to get up and move in whatever way you like best. It gets easier each time you make yourself do it. Before long you will look forward to it.

I agree...just can't find the motivation.

Everyone needs to MOVE every day, not sit around. Terrible habit. You don't need money to learn to do yoga, healthy exercise, take walks, do yard work or gardening. It is a HABIT that needs to be started. "An object in motion remains in motion." Right? Eventually, the activity changes the brain chemistry, which will help attitudes. Sometimes you don't "feel like it." Too bad. If there is a fire in the house, you think those guys are going to continue to sit there? Lol! xo

Dear Scared my husband is diabetic and watches tv all day when he's not sleeping and has an obsession with food. There have been times when he's acted a lot like your husband and when I couldn't take it any more I had a talk with him that seemed to get through to him because he's behaved much better ever since. I told him I didn't mind taking care of him but I would not be treated like a dog by him and if he continued to act this way I would put him in a home with attendants that were paid minimum wage and could care less what his needs were because really that's all we could afford. I meant it because I don't think anyone should have to live under the circumstances you describe. So I can relate to how you feel. It helps me to volunteer in my community because it gets me away for a few hours and keeps me in contact with other people. In your case it could even lead to a job possibly. I hope you will check this out because you deserve to be happy too.

You are lucky, Mary, that your husband will participate in these things with you. My husband won't do anything but sit in front of the TV and eat caramels...and he is diabetic. He won't go to any of the "senior centers" here where there are activities, etc., many which are free. He has always been "fussy" about his friends, picking and choosing very selectively. Consequently, I have been isolated from my entire family and friends because he doesn't like them. I wish I had left years ago when I had a job and could make it alone. Now I can't even buy an interview, let alone find a job because I had to quit my job because he wanted to move back to Florida. I hate it here and I am beginning to hate him. Sad, but true. I just want to run away and never, ever look back. Count your blessings. You are very fortunate.

Thank you Jeannegibbs for your kind words and insight. I like your idea about day trips and the electronic scrapbooking. We will try that out.

marystidham, good for you! I'm sorry about your sister's attitude, but if seeing someone put their own convenience ahead of a loved one's quality of life inspired you to take a different approach, then I'm glad she displayed her attitude so blatantly. (Maybe in time she'll come around to a kinder approach, too.)

Enjoy every morsel of your time together that you can. Also get some "me" time in each week for you. Realistically you may need to consider a care center at some point -- not because the love of your life has become too inconvenient, but because that is how to provide the best quality care you can at that point.

I was fortunate to be able to keep my husband at home with me for the entire journey (9.5 years), ending in hospice care right in our bedroom. We continued to travel and to go on day trips. I took a lot of pictures and did electronic scrapbooking to turn them into books. That way he not only enjoyed seeing the replica of Columbus ships when they docked nearby, he could also tell others about it, using the book as his reminder and prop.

It sounds like you are doing great, Mary. Follow your heart (and listen to your head, too). Getting some help as it becomes needed will support you in your decisions.

Keep in touch here. We'd love to hear how you both are doing!

I went through a time when I felt resentment about my husband's inability to do the things we thought we'd be doing after we retired. The more I read up on his illnesses and read articles on Aging Care the more I began to think of it more from what he's going through than what I was missing out on. It brought it to a head when my sisters from Wisconsin came to visit my daughter in Texas and left me out because they didn't want to "put up" with the inconviences of me bringing my husband along. They had told me the time before that I just needed to put him in a home. He is so vulnerable right now and needs to be with what's familiar to him. We may face this decision down the road but we're not there yet. I volunteer at our community library once a week and do other volunteer work that doesn't take me away too long. We go to lunch every day at our local Nutrition Center and visit with the friends we've made there. He looks forward to it every day and I do too. We exercise 2 days a week at a church nearby and we really enjoy that too. For now I am going to concentrate on him for as long as we have while he's not too bad off. I'm much happier and at peace since I made that decision.

originally my husband was diagnosed with Parkinson's and Alzheimer's, but now they believe it is Lewy Body Dementia which presents symptoms of both PD and AD. So, they are weaning him off his PD meds and adding more antipsychotics for the hallucinations due to the LBD. He is also on the Exelon patch. I don't know if they'll keep him on that or not. I can leave him alone for an hour or so, but not over mealtimes or med times. Doesn't leave much time for fun stuff with grocery shopping and other errands to run in the limited amount of time I can be away. I am trying to get some help but it's a LONG, SLOW process so even if your loved one is in the early stages, start NOW to get help in whatever form you need: long term care insurance claim, Medicaid, VA benefits. All of these can take MONTHS to get started so don't wait until you MUST have help to start the ball rolling. Good luck and God bless.

balexander9 - I was moaning to my shrink today along those lines. My husband and I are around the same age, and when he's gone, I too will be elderly and unable to have any fun.
It suddenly occurred to me that I shouldn't wait until he dies before I have fun! Of course I will be doing more caregiving than I would prefer to, but I can make fun-having a priority as well. My husband can travel with me, or he can be left unsupervised for a few hour or days while I travel or go to yard sales or go out folk dancing. I do feel afraid of being hopeless and trapped, so I'm trying to plan to prevent those feelings.
Your husband doesn't need to be in a NH yet, but he could go to a nice one for a week while you have a break, couldn't he? I assume all our money will go to the NH in the end, so why not spend some now?
Of course, this assumes that you have any reserve of money to spend. I know a lot of people don't, no matter how hard they worked. I encourage you to get as much help as possible so that you have at least short periods of freedom to look forward to.
I catch myself looking forward to my husband's death. I don't think that makes me a bad person, but I'd rather not feel that way. So I'll try to always have something happier to look forward to, however brief.

It is a very hard road we're on.

My husband doesn't have the full set of symptoms that would be necessary for a diagnosis of Parkinson's Disease in that he doesn't have any tremors, just the classic Parkinson's-like gait with poor balance. There is some thought that he might have Lewy Body Dementia, a form of dementia that includes Parkinson's-like symptoms together with dementia. There is apparently no treatment for this. I have been giving my husband hose dose B12 supplements with no noticeable effects. My husband sleeps well with no signs of sleep apnea. Parkinson's meds never helped him so they took him off of them. My husband's dementia has been developing slowly over the course of about 15 years and continues to progress relatively slowly, although he is now no longer able to be left unattended because of the combination of his poor balance/motor planning skills and his poor judgement about what is safe for him to do. My husband is 79 years old and I am 68. I get really upset at the idea of continuing to be my husband's primary caregiver for years to come but he doesn't seem impaired enough for a residential setting (even if we can get him qualified for Medicaid so that it would be affordable). I feel so trapped and hopeless most of the time.

My husband was diagnosed with moderate to severe dementia after taking a psycological exam used to discover mental abnormalities. He has Parkinsons as well. His neurologist discovered he had a very low level of B12 and she recommended taking over-the-counter B12. His improvement since then has been remarkable. She also put him on the Exelon patch but he developed a bad rash and was switched to Rivastigmine in capsule form. He was also diagnosed with central sleep apnea several years ago and sleeps with a Vpap machine that made a big difference as well. I switched doctors about a year or so ago because the ones he had weren't listening to my observations and seemed happy to put him on Parkinsons meds and just keep him there even though they did nothing for him.

awakening:
thanks so much for your input here. Had not thought about the possibility of a care facility that handles "high-functioning" dementia folks.
That would be my husband at this time. There are days, one would not guess his condition, all seems normal, then there are days everything comes unraveled, including my patience., and I feel like I might lose my sanity.
So now knowing about this type of home, I can search a different avenue for his day care, and gradually move into a more advanced care program, as this ugly disease progresses. I have visited a couple of assisted living facilities, and was not impressed, the residents, did not seem very mobile or aware of their surroundings, and that's not a place for him right now. So the search will continue. Thanks so much

I send my husband, who needs constant supervision because he also has dementia and Parkinsonism and is therefore very prone to falls, to a memory care assisted living facility for short stay "respite" stays of 4-5 days. It costs more than the adult day care program he usually attends so that I can work part-time but gives me a chance to have a few days when I can focus on my own needs. I am able to go to dinner and the movies with friends, get a manicure and generally be spontaneous rather than having to plan every outing well in advance. The memory care facility is in what looks like a private house where he has a private room. There is an activities coordinator so there are things to do all day long, the food is home cooked and eaten family style and the people who work there are a lot more patient than I am most days. I do not feel guilty about this because having this break to focus on my own needs makes it possible for me to be a better caregiver the rest of the time. I only wish the memory care program was covered by insurance since it is sometimes hard to afford. But what price can you put on your sanity?

While knowing many are going through this, it is so helpful to have others express the same conditions, behaviors, attitudes and frustrations. For me it is mom - the denial of level of dysfunction, blaming me for treating her like a child because I monitor her actions and manage all business & financial things, telling me to leave reminder notes and then completely ignoring them (? or not having the sight of them register in her brain), being nasty and self-centered, and completely lacking in common sense and judgement. Mom's identity is wrapped up in being well-groomed and accessorized, but she can't see differences in colors within the same family (red vs orange vs pink) or the stains on her clothing, yet fights my assistance with choosing outfits and gets really belligerent. Have not heard others talk about this symptom - of having good vision, but not having her brain register what she "sees". I gave up my comfortable life to move across the country and live with/care for mom 2.5 years ago. Mom attends a wonderful day program for high-functioning dementia folks which she now loves, but initially hated me for even suggesting that she go. She sleeps well and so far I'm OK continuing to care for her at home, but have started exploring assisted living facilities for the likelihood that as her needs become greater, we will need a change. Despite my prior BELIEF that assisted living facilities and memory care units were horrible places and that it was my responsibility to be mom's caregiver and keep her in her home unless or until her disability made that impossible, my perspective has shifted. My visits to quite a few assisted living and memory care facilities have made me aware of the benefits of community, the structure of scheduled activities, and the kindness and compassion of most of the staff (who are not emotionally triggered by the grief both conscious and unconscious that I experience) can maximize her quality of life. Keeping someone in their home might feel like the kindest thing to do for our loved ones, but the isolation and caregiver stress do not serve either party. My mind has opened around all of this, and when mom is no longer high functioning enough for the day program (very inexpensive - not the typical locked and costly "memory day care environment") I will move her into assisted living in HER best interest, which will also serve me. Being a martyr does not address the need for caregiver self-care, which I believe needs to be a priority. Parents caring for children are in the stage of life appropriate for the sacrifices of parenting and have chosen that. Other than the supervision required, there is little about the progression of dementia that resembles child development and the joys that accompany it. With close knit community and local extended family a rarity these days, I don't think we need feel obligated to give up our productive and purposeful lives in order to manage all the care required for progressing dementia when good alternatives exist. Thanks for being here to listen.

Well, instead of acting like a bratty sister, act like a responsible wife who is concerned for his well-being. He is only going to get worse. When he does something "wrong" ask him if maybe there might be another way to achieve whatever he was doing. That way you won't belittle him and his brain might remember the way it used to be done. In any event, all you can be really is understanding and practice PATIENCE. We all could use more of that! Read some books or go see a neurologist/psychiatrist to have it explained to him and you what it might or might not be. You take tests for dementia and an MRI can show areas of the brain that don't show up (to get the full treatment a PET and CT can be definitive too). Find out soon so you can start planning your life. It definitely will change! Best wishes.

My husband also has dementia which seems slow moving. He really only knows he has memory problems. I just want to alert what a friend told me which she did for her father. There is something called Vet Aide and Assistance many don't know about. To qualify they had a lawyer who was VA smart and wrote up an irrevocable trust so he now qualified. My friend supersmart filled out the really long forms herself and in 2 months received $1600 mo toward his AL care. Friend said it will probably cost $4000 to have it done but a drop in the bucket for the long run. Her fathers cost $5700 mo. He was not a retired vet but served during certain time not even out of US. Check it out on computer. Suggestion is have all info with you as time is $. Anther book Checks for Vets very helpful.

trustpact & potpot: I know exactly what you are going through and how you feel. I don't have any real answers for you...just sympathy and to tell you that I pray a lot and worry even more. My husband is set up to take a special driving test because he is not about to give up his license voluntarily. When we (myself and the OT-ist/case manager) explained to him the ramifications of his having an accident, he told us we were exaggerating. If something happens, he is not the only one who would suffer. I would to. Do you think I could ever get insurance again when I "knowingly" allowed him to drive? Not in today's world. Unfortunately our husbands (and all other people with dementia) cannot be reasoned with. They do not understand logic and when their personalities have always been "me first" and "I'm always right", it only gets worse with this disease. Continue to vent here. Read all the posts because something might give you an idea for help. and pray everyday for strength, courage, the right thing to do and say. God bless!

Make sure you keep coming here and reading thru the posts, especially when you are frustrated. Feel free to vent. People here have the most wonderful ideas, practical ideas -- so always come and ask the silliest question -- you'll be surprised by the support and "bright idea" that will be just what you needed. Also, be sure to share your successes and keep us posted on how things are going!

Thanks, everyone, for your comments. My situation isn't too bad now, but I worry about the future. I like the idea of naming the disease. I can just call it ADHD. When I'm angry at him, sometimes I call him a poopyhead, which always makes him laugh. Or I can give him his cat, which cheers him up beyond words. It really is different with a husband (or wife) than with a parent.

Like Bettylu and Scared, I could have written this! My husband has PCA, a rare form of Alzheimers. It was slow getting an accurate diagnosis, because he remembers many things very well, but his visual/spatial processing is extremely compromised. He understands what is happening and is extremely depressed and works very hard to continue living as normally as possible. There have been times when he was so angry, he threw furniture or threw himself on the floor in a rage, cried, yelled. He would sometimes even start to get rough with me and then realize what he was doing and have trouble forgiving himself. He now accepts things a bit more, but still has terrible anxiety and depression - none of the meds have helped much.
As for his helping, he was always "Vac-Man" around the house and continues to use the hand vac. He cannot operate the CD player, TV remote, large vacuum, or an other machinery. If he helps in the garden, I can guarantee he will make a major mess of it. He used to pull up the flowers and leave the weeds, tear instead of prune ferns, trample through young beds, water the paths and not the beds, etc. Mess-ups happen in the house all the time! He does wash dishes sometimes, but I have to re-wash them. One evening I came home from work to find doggy diarhea on the kitchen floor. He had walked through it all day without noticing it, tracked it all over the house! (That was before we had in-home help, which he refused until that happened and I had to insist.)
Of course I cannot tell him he's made a mess! He becomes defensive and angry with me - "You don't know anything", "You have no heart", "I knew how to do things long before I met you", etc. etc. I'm still learning to accept that this is the new normal. Things really go much better if I let him do whatever he's doing, say nothing, and just go behind him. (Unless what he's doing is dangerous.) However, this method, while keeping peace at home, gets to me after awhile and I have to vent somewhere. (Thankfully, I have understanding friends!)
We've already done the POA and my husband is on Medicaid. I'm thankful he's still at home and still has much of his memory and personality intact. Knowing our time is limited though, helps me cope with the difficult times and appreciate the good ones. That said, this is the toughest job I've ever had to do!
Good luck, Jinx, you're in for a rough ride! Keep in touch!

How about giving him easier jobs around the house? He could do the vacuuming and the dishes, right? Gardening is ideal. It is good therapy, fresh air, rewarding because you see results. Put clothes in dryer, folding, put away. Switch roles.
Start giving him coconut oil and find out the optimum diet for preventing or slowing dementia. Crossword puzzles for brain exercise helps with abstract thinking.
Time to shift your gears about his performance, otherwise you will drive yourself nuts. We resist new chapters, especially near the end of the book.
If we can learn to adapt with Grace and say "This is the way it is NOW," we can move forward and accept life changes better. Stay calm and try to center yourself. Help him in the garden. Meditate and pray a lot. xo

Sorry, they are told he made too much money! Really? At the end of the month they are broke with no,food money till next ss cks come in. My sister can not work, she can not collect benefits, she has to care for them 24/7. So there is no additional income. What is wrong with this system, we are all born and raised I. The US, we are citizens going back to the 1600's so why don't , can't. We get help???

This is specifically in response to balexander9's post, but may be relevant to other spouses as well.

I can't tell you how very helpful it was that my husband knew his diagnosis and accepted it. Oh, he was not happy with it, of course, and he went through the "why me" anger and "I wish I were dead" depression, but within a few months we both settled in to deal with the here-and-now. His doctor said, "I have to report all dementia diagnoses to the DMV and they will cancel your license. I am very sorry, but it has to be done for safety." He mourned his special edition Miata for a year, but he never tried to drive again. (He drove me nuts as the passenger seat driver, but I tired to be patient about it.)

He had Lewy Body Dementia, which involves Parkinson's symptoms, high fall risks, and extreme variability of cognitive skills.

He didn't think he needed as much supervision as I knew he needed. But it was extremely useful to be able to say, "I know you can stay alone for a while. You are intelligent and have good judgment. The problem is that we never know when ol' Lewy will take over and Lewy does not have a good memory or good judgment. So we'll just play it safe, and someone will be here while I am out."

When he was discouraged because he couldn't do something I could hug him and say, "You are just having a Lewy day, Hon. Maybe tomorrow or even later today you'll be doing better. Just relax here and watch this video about bird migration. Don't worry about anything. I'll handle it."

And we he could remember something that I didn't I'd say, "Hey, wait a minute! Which one of us has dementia?" and he'd laugh. He liked that.

Before he got on the best combination of drugs (which took about a year) and he was falling so often he hated the walker, and I didn't blame him. He would just fall down with the walker! But getting a wheelchair was a huge improvement. He felt safe. He could scoot all around the house in it. His doctor warned that he should do enough standing and walking so as not to lose the strength to transfer. Ha! As his health improved he only used the wheelchair for long excursions, and he went on to bowl with the senior league and golf with a league for persons with handicaps.

My mother has dementia and no one is telling her that. I believe that one size does not fit all on this issue. But when it comes to living with a spouse, I cannot imagine how much harder it would be if you both don't have a clear idea of the diagnosis and the limitations that imposes.

It is good when the two of you together can fight against the enemy, dementia, and not fight with each other.

My mom (81) and dad (83) both have serious mental capacity issue. Mom has early dementia. So e days she is ok, kind and caring, other days she is very verbally abusive and argumentative. Dad has has brain atrophy due to a stoke he had several years ago and although he never really had severe impact from the stroke such as motor or speech, he has become more and more mobility impaired where now he uses a walker/wheelchair. He also is showing signs do dementia as well where he speaks to deceased relatives and tries to get or remove imaginary things. He was I the hospital at Florida Flagler hospital I palm coast fl. They never gave us a definitive answer as to a diagnosis. He then spent a week Ina rehab, were things only got worse. He has had MRI 's of which there was no indication of further stroke or damage other than the above mentioned initial damage. He is incontinent and needs attendance. He is a risk for falling and refuses to follow safety directives regarding this . My sister is their primary caregiver. She too has health issues and this is affecting her health too. Neither mom or sis are getting any sleep because they are constantly listening for him at night. He has tried to leave the house in middle of night. I sent them door alarms to assist with that. He tries to get out of bed in the night. A hospital bed with rails and footboard was ordered to try to keep him inbred at night. My sister has tried to get assistance from Humana for him. They got a limited number of nurse visits to ck blood pressure(wow), and phys.therapy..again with only a few visits. There are no resources to help them that do not cost a fortune. My parents live on $2,300. PER MONTH, from which comes rent, meds, food, utilities and insurance payment and copy's. Dad was only covered for 5 days in rehab and his hospital stay was billed for additional days because he was there almost two weeks. My sister was told he alone made to qualify for Medicare/Medicaid assistance. His income monthly is only $1,700 per month. He will need to be placed soon, and we are afraid mom will too at a future point. How are seniors supposed to survive and exist Ina system that casts them aside and really offers NO affordable assistance. They don't qualify for assisted living and can not pay for anything else. Wonder why caregivers who are family have their own mental meltdowns? This site is helpful to vent for caregivers, but what we need is a system that really can offer REAL assistance for our seniors from the insurance companies and the government. It is disgusting that we are one of the wealthiest countries In The world and we treat our elderly, our parents, who worked their lives to help make this country strong with such disdain. I Live in MA and do what I can from here to help, but there is only so much that can be done.