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If there are brain changes/brain issues, the brain may not recognise any changes. It can be a lack of insight. (The medical term for this is Anosognosia).
But while saying that, some people DO have & keep insight. And sometimes there is a little denial you can break through.. It's worth trying! But my advice would be to go small.
Make the diagnosis more *accepable* by using medical conditions your DH accepts. Make it specific. Rather than use the D word, use the Vascular one.
It may seem like minimising a big issue but normalising it as 'blood vascular issues' or 'oxygen in the blood' or even 'blood pressure' problems could work?
I think the biggest adjustment of all is when a couple go from making joint decisions, to one spouse having to make solo decisions.
To borrow from Teepa Snow, Dementia Care Specialist, the person with the 'Sapphire Brain' must use it. Check out her websites (explains her gemstones labels). Videos can be found online that give amazing practical tips too. May be good down the track.
Data, so sorry you are going through this, please do what Beatty said.
From my very limited experience of dementia, I feel like vascular effect the reasoning part more in away than Alzheimer's. So with that it would be harder for them to understand and easier for them to live in denial.
I suspect moms got some vascular, because you can't reason with her about something. The fact that she insisted my father was a great driver , before he passed , and no amount of explaining it to her did any good, but get a lot of anger, showed me, her reasoning is not good.
I endorse Beatty's advice. Mother had vascular dementia. Fortunately she accepted that something wasn't right, but on the other hand she refused for quite a while to take meds that would have helped her. It was a difficult time as she needed more and more help but didn't always want to accept it.
Any dementia journey is a difficult one for all involved.
I would recommend reading about vascular dementia to help you understand what your husband is going through and also learn about the progression of the disease.
Mayo Clinic says - "Vascular dementia is a general term describing problems with reasoning, planning, judgment, memory and other thought processes caused by brain damage from impaired blood flow to your brain. You can develop vascular dementia after a stroke blocks an artery in your brain, but strokes don't always cause vascular dementia." (My mother never had a stroke but she did have high blood pressure at times which caused the damage.)
Considering the above, your husband will likely not be able to take as full a part in decision making about your collective future as he would have before. He already has some brain damage which will limit him.
These times of transition and not easy. More and more you will have to rely on yourself and whoever else you have for support to make the decisions which affect both you and your husband, It's important to have support of others, be it family, friends and/or a support group such as you can find here, or a face to face one in your community.
Make sure to look after yourself. You are entering the world of caregiving which is a draining one. It's important you care for your own needs as well as those of others. ((((((hugs))))) from me too.
So many people diagnosed with any of the dementias choose to live in denial, until they can no longer. It's a hard pill for them to swallow, so I can't necessarily blame them. But I know that doesn't help you one bit. Because vascular dementia is the most aggressive dementia with a life expectancy of just 5 years you need to make sure that all your legal affairs are now in order, POA's, will, living will, trusts and the like. And you will have to take the lead to make sure these things are all in place. That will at least give you peace of mind that all your legal ducks are in a row.
My late husband was diagnosed with vascular dementia in July 2018, though he was showing signs a good year prior, and he died Sept. 2020. There is no happy ending with dementia, so you're smart to want to get things lined up for what is to come. And just FYI, I never told my husband what his diagnosis was as I saw no purpose, especially once I learned of what the life expectancy was, as I just wanted him to be able to live out his days the best he possibly could. We did however have our legal ducks taking care of before then.
I wish you the very best as you walk this very difficult road with your husband.
Lots of Great advice you are receiving from other Caregivers On the Forum . I think it is best not to discuss the diagnosis with the Person . I never Mentioned it to My Father . For some alternative therapies I would suggest Community acupuncture or an acupuncturist , Some People swear By Lions Mane Mushrooms It rebuilds nerves in the brain get In Gummy form the tincture is Bitter ( Look On Etsy ) I found a Person in NC For My Aunt . Also Cranial sacral therapy Is helpful for Older people . Exercise , walks , a good diet - Organic non Processed foods such as Fresh Fish ( which is considered a brain food ) walnuts, Blue berries and avocados , Oatmeal . Check out the Mediterranean diet . Stay away from white sugar , Meat , anything with Hormones . I Myself do not Like a lot of medication and neither Did my Dad . CBD Gummies can be helpful for anxiety speak to someone at Happy hemp Buddha in Colorado - TJ Or Kate . Just Live Your Lives Normally and have compassion . There is a good course today Saturday at Upaya Zen Center On Zoom By Donation or free with Joan Halifax and Frank Ostaseski ( They Have done Many workshops for caregivers ) Called Love and Death . It is Best to educate yourself Alzheimers association Has courses called the Savvy caregiver and Teepa snow Live - I Use the Alzheimers association in Brewster , MA . Anyone you can use but people will call you from there and speak with you . Get as Much support as you can , Get Massages for yourself . Sometimes you will feel very sad - there will be good days and Bad days . There is another course coming up with Joan called GRACE That Costs and is Primarily for Nurses and doctors but caregivers also . I have taken that Course 3 times . Life Comes in stages and People can Live a longtime with Dementia .
Hi Data, I am sorry to hear what you and your husband are going through. My dad’s formal diagnosis was behavioral variant frontotemporal dementia, but the neurologist said his brain atrophy was also consistent with vascular dementia and Alzheimer’s so maybe he had a combination.
He had close to zero understanding of his condition. He and my mom were both present when the neurologist explained it in stark terms. He had Zero reaction and found the topic uninteresting and unworthy of comment. He was diagnosed at 77 and lived another 3 years. During that time, maybe once or twice he seemed to acknowledge he had altered abilities, but for 99.5% of the time, he was unaware and mostly angry about what he could no longer do—drive, handle finances, climb ladders onto the roof, then more and more like work the TV remote, his flip phone, the microwave, then at the end walk etc. Anosognosia is real. If they have it (which my dad did and I think the majority of dementia patients do) Trying to convince them is like beating your head against the wall. I know at first it seems impossible to “work around it” and not discuss it and treat them like a toddler and tell white lies but it is actually a lot easier that way. I think most find this true. I would recommend you find a support group — in person or online— if possible. I truly believe this disease is crueler on the caregiver than it is on the person who has it.
Suzy, my husband has end stage FTD/PPA with a dual diagnosis of vascular dementia thrown in. He started early in his 60’s slowly and is now 76. At the time, there was not enough change to even talk about it. Eventually, he couldn’t find words to speak anymore and a brain scan showed the FTD. Not the behavioral kind. He was, at that time, apathetic and not in denial - just not interested or whatever. I was devastated and researched everything and knew my life was going to be a nightmare. I took care of him until April of this year and Hospice and Palliative Care team said it’s time I get nursing home care or I will jeopardize my own health. He’s been in a wonderful nursing facility now and the guilt I felt is no longer there. He can’t walk anymore and is wheelchair bound, is completely nonverbal and just stares. This FTD is the worst of the worst - I guess ALS is THE worst, but, I understand FTD can turn into ALS. I went to support groups and it did nothing for me. I need a support group that is strictly for caregivers/partners of FTD and not just a lump under “dementia” because the majority of people say “oh my mom has Alzheimer’s” and they are 2 different types of dementias. My husband was never in denial- he is the one that approached me and asked for help. I was shocked. He said “my brain isn’t functioning properly anymore and I’m sick of trying to find words.” My heart just sank, Dealing with all dementias is the worst thing a human being can go through. It’s beyond heartbreaking. My advice here is to remember yourself in this journey and get help or try to get your loved one in a great facility so it’s not in your life 24/7. I know that’s easier said than done. I have no family nearby, either, so the decision was easy for me. Kids are all on West Coast and we are in PA.
Part and parcel of almost all dementia is extreme denial. I think you will find that you have less and less control over your husband's ability to understand reality. The really important thing now is to know you are POA, that important legal documents are done and in place including advance directives. That you have some control over protection of him.
My brother, when diagnosed with probable early Lewy's was accepting in a way few are, and we always could talk about it. Happily for him and for me he died within a year and one half of his diagnosis (his fervent wish) of sepsis and didn't have to stare down a whole lot of deterioration. He actually said he was happy to know of his diagnosis for while he hoped to beat it by dying quick, he was glad to know why he saw the world now so differently. That is RARE.
I would start with telling the diagnosing Neuro psyc MD that your husband, being practical as most men are, needs the doc to TELL HIM in no uncertain terms what he has and what that means and why he must allow YOU now to do executive decisions and functioning for him. This is hard to deny in MD office, tho as Beatty says, most denial is actually part of the medical condition, and may return. But this needs now to be done clearly, by an MD and in no uncertain terms.
I am so sorry to tell you that this is a beginning for you of a very tough journey. I hope you have support and a good medical team, and that you and hubby already put in place the things you need to take over functioning for you both. Consider asking your husband's doctor how how to contact a social worker. I think you may need a nurse manager or other medical help to help you assess what your next moves will have to be, to help you get educated and negotiate "the system".
Begin by watching some Teepa Snow videos which are available free online. This will give you a beginning place in just being able to communicate with hubby.
This is a massive subject, a massive life change you are embarking on, a steep learning curve for you, one with many questions and varying answers and things to try, but you will need support and guidance.
Do try to go to Facebook and look up Vascular Dementia Support Groups. You will get help from those who have been/are there. Do go to Alz.org , Dementia Society of America and any other dot-org societies you can find dealing with vascular dementia. The place to start is in seeking of all the information you can find.
On AC here, go to the top timeline in blue, look for the magnifying glass, click on, go to search anything including Vascular Dementia so that prior questions may help you find answers now.
Best of luck. Come back with any specific questions you find on your journey. We here will try to help.
I agree with everyone else that it is unlikely you can help your husband to move past his denial. Vascular dementia is a strange one, as it affects everyone differently in the early days, depending on which parts of the brain are affected and why.
My mum developed vascular dementia some years after having a stroke. She quickly forgot her diagnosis, after I told her, and would either deny there was anything wrong with her or would be surprised when it was mentioned (thankfully, never upset). She had a wonderful, dry sense of humour and when I would say, "It's okay, Mum, you forgot about having dementia," she would come back with a quip about "forgetting" and "dementia" - totally deadpan - that would cause an uncomfortable pause until the twinkle in her eye and knowing smile would have us helpless with laughter.
She and her husband arranged their funerals together; I helped Mum because of her losing executive function, as well as her failing memory. She used a lot of dark humour, especially about her choice of song as the mourners leave the crematorium: "Halfway to Paradise" by Billy Fury.
So, instead of trying to get your husband to accept his diagnosis, I would suggest that you tell him you want both of you to make arrangements together because neither of you are getting any younger. When my stepdad broached the subject, he said that it was important for both of them to know that they'd made plans for what to do if anything should happen to the other one. Just don't promise to never place each other in a care facility - it would cause guilt if that's what is eventually required. Nobody has a crystal ball to see into the future.
Mum was diagnosed about 3 years ago, but she may have developed vascular dementia before then - it was difficult to tell because of the brain damage caused by the stroke. Up until a couple of months ago, Mum still had her intelligence and could beat me in a quiz, even though she was unable to make decisions or find her way around their tiny flat. Then, she started to go downhill rapidly, along with the advanced COPD, which further deprived her brain of oxygen.
Mum died yesterday, peacefully in her sleep with friends and family by her side. I'm so glad that we discussed her wishes a couple of years ago, as it made making decisions about her end of life care easier and I know exactly what she wanted for her funeral.
It may take a while for him to get through the denial stage. (One of the 7 stages dealing with death) Then again he may NEVER get OVER it It might be up to you to help him get THROUGH it. You need to do what you need to do to prepare for the future both yours and his.
Talk to him when you are both calm and can discuss things. What does he want. What are his end of life decisions. Are there things that you both want to do that you can do now that you will not be able to do in 6 months, 12 months, 2 years? Do them now
[It is my understanding] When a person is diagnosed with vascular dementia, their brain chemistry has changed / and will continue to change. They are unable to 'discuss' what they want as they do not have the brain cells to do that any longer. Their 'thinking' is confused, distorted, perhaps non-sensical.
* A person 'asking' a person with dementia what they want' is asking for chaos, frustration, and be in a 'no win' situation.
If you have documented information to the contrary, please provide to us.
You're unlikely to convince him of anything. My mother suffered from anosognosia for the entire term of her vascular dementia journey, insisting there was nothing wrong with her, the others in her Memory Care ALF were all nuts, and her doctor was a "dirty liar".
You'll likely be on your own to decide your future, hubbys not doing any decision making except for probably trying to stymie YOU from making changes. The argumentative attitude can be staggering with dementia, the stubbornness mind boggling. The road is a difficult one.
Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with DH. The 36 Hour Day is another great reference type book you should have on hand.
You used a term that a lot of people have never heard. "Anosognosia" is a term that needs explaining.
Anosognosia is a condition in which a person with a disability is cognitively unaware of having it due to an underlying physical condition. Anosognosia results from physiological damage to brain structures, typically to the parietal lobe or a diffuse lesion on the fronto-temporal-parietal area in the right hemisphere and is thus a neuropsychiatric disorder. It is common in mentally ill people and in dementia and Alzeimers patients.
Start planning for the future while he can be left alone. Visit places and learn about dementia even from this Forum. There are references on care topics at top and at the bottom of this page. Do search out a couple of ALs and MCs to get a feel for them in case you start heading for burn out. You should seek the advice of an elder lawyer to make sure your papers are in order especially the POA and an assessment of your assets that you might want to split while he still understands. It might look pricey but doing everything early saves much more $$$.
You help him by keeping him as calm as possible. You cannot change his cognitive functioning, i.e, 'help him move beyond his denial' - he may always be in denial.
* You do what you need to do to prepare for your / his future. * You do not ask him; he will likely both be in denial, not understand what you are saying/what the needs are - or why. (He may 'live' in present time only.)
* Start to learn more about dementia. - Google TEEPA SNOW, one of the country's leading experts on dementia. - Watch You Tubes on Vascular dementia; read books.
* You learn that dementia is learning a new language (/way of communicating). - There is 'no such behavior as lying to a person w/dementia. You tell them whatever will appease them / keep them calm and feeling as safe and secure as possible, then change the subject).
If it were me, I 'might' start a journal documenting his behavior changes. This might help medical providers to see a pattern over weeks, months, etc. and determine if some medication is needed. At the least, it will help to see patterns of cognitive/behavioral changes.
* Realize that you are grieving in slow motion. You have lost the husband you have known for years, if not decades. Allow yourself to grieve. - Get into therapy if you need to. - Find a dementia Association and join a support group (as well - call for info.
* Be sure to take care of yourself "self care" is critically important: - Get enough sleep - Exercise / walk / go to a gym / take yoga and/or stretching classes, ride a bike - Eat nutritious foods; do not 'eat in' your feelings (sad, overwhelmed, exhausted, which is very easy for some of us to do). - Be willing to FEEL everything you are feeling; don't stuff feelings in as it will adversely affect your own well-being. - DO rely on good friends, neighbors, church or other organizations you belong to for support (perhaps ask some folks to visit your husband if it seems he is open to it).
Realize he will continue to " believe he knows what he believes he knows" ... he may react in anger, mood changing (depends on his personality type - he may turn inward). When he exhibits a change of behavior, NEVER argue with him. Perhaps say "okay, I understand,' then change the subject and do what you need to do.
Our hearts go out to you. This is not easy for anyone. We are here to support you.
Another good source of information is the Dementia Society of America who publishes "The Big Umbrella" and sponsors a weekly Q&A with Tami Anastasia. Tami's book excellent.
Just continue to love your husband and forgive him. Learn more about his diagnosis. There is medication to possibly slow down the progression. Try not to show your impatience. You may have to seek out a Memory Care facility in the future.
You might search for and read up on both a new trial conducted by the University of Oxford and a Cleveland Clinic proposal of using Erectile Dysfunction medication as novel treatment for dementia. It increases blood flow to the brain. Discuss it with your doctor.
You don't mention his current symptoms and the effect it is having on your day-to-day life. I assume since he was just diagnosed, that his behavior hasn't changed all that much, although you are anticipating that it will, and you want to be prepared. You should prepare yourself. Read as much information as you can about vascular dementia, and learn what to expect. I don't think he needs to accept it. What benefit would that have on the outcome? For now, simply keep your daily routines and your interactions with him as normal as possible. As his brain begins to fail, he probably won't know the difference. You will see it though. So, it will be up to you to be prepared and do your best to gently guide him through his day to keep him safe. For instance, whatever you can do to keep him from driving when his brain is not working, do that! He will need to quit his job, if he is working, when he is no longer able to function at work. There will be a lot of changes. Take each day as it comes. Continue to live as normal a life as you can. Imagine how scared he must feel when he is confused. Or when his bodily functions fail because the body is not getting the right signals from the brain. The best thing you can do is help him feel safe. And don't expect him to understand, or try to make him understand. He won't. There is one bit of preparation you should try to get in place while he is still able - get the paperwork for Authorized Medical Representative and Power of Attorney, then sit down with him and go through it together. You may want to do this with an attorney who can help explain and answer any questions. If your husband is in denial and feels that this is unnecessary, that you are trying to take advantage of him in his failing health, you can complete the power of attorney forms for each of you, naming a child, trusted friend, or relative as an alternate POA if either of you should become incapacitated, is just a smart thing for anyone to do! I wish you well in this journey. I suspect it is you who is having the most trouble accepting this new diagnosis. Yes, it will change your life. But it doesn't have to change overnight. Keep living as you are, and be ready to adapt to new unexpected changes as they appear. And keep coming back to this forum for guidance. We have all been through it and you can find answers and emotional support here.
That's a great answer. However, I'm afraid this part isn't correct:
"If your husband is in denial and feels that this is unnecessary, that you are trying to take advantage of him in his failing health, you can complete the power of attorney forms for each of you,"
Only the person who is signing over the power of attorney to someone else can sign those forms and only if they still have capacity. If the person is unable to go through the rigours of filling in the forms, yet understands what they are signing and agrees to it (they have capacity), then someone can fill the forms in for them to sign. However, they have to demonstrate that they have capacity, that they understand and agree to making someone else their POA for when they no longer have capacity.
I'm not trying to be harsh, but the quicker you grasp the decline of your husband's cognitive abilities, the better off you'll be. And less frustrated with him.
With dementia, he is losing his ability to process reality - thus the denial. He can't help you with planning for the future, and there is no point in trying to force him to accept his diagnosis. Just let that one go.
You're in the driver's seat now and the burden of preparing for the future will fall on your shoulders. Your husband will be along for the ride, so-to-speak.
You will be his main caregiver, I assume. So "take the bull by the horns" and begin making the plans that will work for the both of you.
Southiebella, nothing can be as harsh as the disease itself. It robs us of our loved ones long before they leave us; it robs our loved ones of so much more. I'd rather hear the hard truth than a soft lie.
My dad had vascular dementia. When he was finally diagnosed I was told it that it progresses in steps, where it will suddenly be worse. I found that to be true with him, so preparing as much ahead as you can would be smart. My dad was in total denial until he had a very bad accident and it was apparent he could not live alone any more. What I’d do if I were you is to start getting the things ready you’ll need for mobility and memory issues as they get worse. Find out what your insurance will pay for. Look into respite workers to come and help when it’s needed. Make sure wills and all of that kind of thing is in order before he looses any more memory. Whatever help or support you can line up now will help when you need it most.
Dr. Kubler-Ross outlined her 5 stages of grief/loss. Your sweetheart - and yourself - will progress through each of these stages. However, each of you will most likely have a different progression - faster for some stages and slower for others.
5 stages 1 - Denial - "nothing is wrong" (stage your sweetheart is in) 2 - Anger - "this isn't fair" or "why me" 3 - Bargaining - "Let's try this and it will get better" 4 - Depression - sadness and realization this is "real" and won't go away. 5 - Acceptance - moving into a place of acceptance with what is the new "normal"
So, you probably can not speed him through his stage 1, but you can be supportive. Let him know that his diagnosis is not going away and that you are there for him. Since you are at a latter stage, you could do research and narrow options to those that are reasonable and affordable. When he progresses to a later stage, he will be willing to plan with you - present your research.
If he seems stuck in denial, talk with his doctor about this. He may not be able to realize his problem(s) if that part(s) of his brain were injured. In that case, get POA and be prepared to make decisions for him.
Think about what your definition is of 'denial'. To him, the visuals and voices are real, very real. Regardless of whether they are real or not to you, makes them no less real to him. You have to find a way to have peace with the delusions too. When my wife asks about where did her long since deceased parents are at, I'll just say they had to go home. She's good with that. I don't have to give her strife and convince her she's wrong.
We are further along this path and she knows the hallucinations are not logical. Yet, they are still real to her.
But, I do still struggle with the mental abuse of guilt trips and accusations of infidelity. Heck, another woman is the last thing I need in this season of my life. I doubt if I can ever agree with false allegations of cheating.
Jwellsy…..Thanks so much for your input. Fortunately for us, there are no delusions or hallucinations. We’re early stage, but I suppose it’s possible that could come later. Every case seems to be unique with some commonalities.
Man is this part tough!! My brilliant husband is racing through the advancement of Alzheimer's so fast I can't keep up. He still recognizes that he is confused at times (lots of times not) and he asks me why he his brain is doing this. It's heartbreaking to have to tell him he has Alzheimer's. I agree with everyone who says the denial doesn't stop.
Hurry if you still need to get legal stuff done. I almost delayed too long and if you wait too long a doctor might deem him to lack capacity to make such decisions. You can't become POA without his agreement and having capacity.
I join everyone saying I'm sorry you are going through this. I see this disease destroying your life just as much as his.
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If there are brain changes/brain issues, the brain may not recognise any changes. It can be a lack of insight. (The medical term for this is Anosognosia).
But while saying that, some people DO have & keep insight. And sometimes there is a little denial you can break through.. It's worth trying! But my advice would be to go small.
Make the diagnosis more *accepable* by using medical conditions your DH accepts. Make it specific. Rather than use the D word, use the Vascular one.
It may seem like minimising a big issue but normalising it as 'blood vascular issues' or 'oxygen in the blood' or even 'blood pressure' problems could work?
I think the biggest adjustment of all is when a couple go from making joint decisions, to one spouse having to make solo decisions.
To borrow from Teepa Snow, Dementia Care Specialist, the person with the 'Sapphire Brain' must use it. Check out her websites (explains her gemstones labels). Videos can be found online that give amazing practical tips too. May be good down the track.
It can be a long journey.
(((Hugs)))
From my very limited experience of dementia, I feel like vascular effect the reasoning part more in away than Alzheimer's. So with that it would be harder for them to understand and easier for them to live in denial.
I suspect moms got some vascular, because you can't reason with her about something. The fact that she insisted my father was a great driver , before he passed , and no amount of explaining it to her did any good, but get a lot of anger, showed me, her reasoning is not good.
Any dementia journey is a difficult one for all involved.
I would recommend reading about vascular dementia to help you understand what your husband is going through and also learn about the progression of the disease.
Mayo Clinic says - "Vascular dementia is a general term describing problems with reasoning, planning, judgment, memory and other thought processes caused by brain damage from impaired blood flow to your brain. You can develop vascular dementia after a stroke blocks an artery in your brain, but strokes don't always cause vascular dementia."
(My mother never had a stroke but she did have high blood pressure at times which caused the damage.)
Considering the above, your husband will likely not be able to take as full a part in decision making about your collective future as he would have before. He already has some brain damage which will limit him.
These times of transition and not easy. More and more you will have to rely on yourself and whoever else you have for support to make the decisions which affect both you and your husband, It's important to have support of others, be it family, friends and/or a support group such as you can find here, or a face to face one in your community.
Make sure to look after yourself. You are entering the world of caregiving which is a draining one. It's important you care for your own needs as well as those of others. ((((((hugs))))) from me too.
It's a hard pill for them to swallow, so I can't necessarily blame them. But I know that doesn't help you one bit.
Because vascular dementia is the most aggressive dementia with a life expectancy of just 5 years you need to make sure that all your legal affairs are now in order, POA's, will, living will, trusts and the like. And you will have to take the lead to make sure these things are all in place.
That will at least give you peace of mind that all your legal ducks are in a row.
My late husband was diagnosed with vascular dementia in July 2018, though he was showing signs a good year prior, and he died Sept. 2020.
There is no happy ending with dementia, so you're smart to want to get things lined up for what is to come.
And just FYI, I never told my husband what his diagnosis was as I saw no purpose, especially once I learned of what the life expectancy was, as I just wanted him to be able to live out his days the best he possibly could.
We did however have our legal ducks taking care of before then.
I wish you the very best as you walk this very difficult road with your husband.
He had close to zero understanding of his condition. He and my mom were both present when the neurologist explained it in stark terms. He had Zero reaction and found the topic uninteresting and unworthy of comment. He was diagnosed at 77 and lived another 3 years. During that time, maybe once or twice he seemed to acknowledge he had altered abilities, but for 99.5% of the time, he was unaware and mostly angry about what he could no longer do—drive, handle finances, climb ladders onto the roof, then more and more like work the TV remote, his flip phone, the microwave, then at the end walk etc. Anosognosia is real. If they have it (which my dad did and I think the majority of dementia patients do) Trying to convince them is like beating your head against the wall. I know at first it seems impossible to “work around it” and not discuss it and treat them like a toddler and tell white lies but it is actually a lot easier that way. I think most find this true. I would recommend you find a support group — in person or online— if possible. I truly believe this disease is crueler on the caregiver than it is on the person who has it.
He’s been in a wonderful nursing facility now and the guilt I felt is no longer there. He can’t walk anymore and is wheelchair bound, is completely nonverbal and just stares. This FTD is the worst of the worst - I guess ALS is THE worst, but, I understand FTD can turn into ALS. I went to support groups and it did nothing for me. I need a support group that is strictly for caregivers/partners of FTD and not just a lump under “dementia” because the majority of people say “oh my mom has Alzheimer’s” and they are 2 different types of dementias.
My husband was never in denial- he is the one that approached me and asked for help. I was shocked. He said “my brain isn’t functioning properly anymore and I’m sick of trying to find words.” My heart just sank,
Dealing with all dementias is the worst thing a human being can go through. It’s beyond heartbreaking. My advice here is to remember yourself in this journey and get help or try to get your loved one in a great facility so it’s not in your life 24/7. I know that’s easier said than done. I have no family nearby, either, so the decision was easy for me. Kids are all on West Coast and we are in PA.
My brother, when diagnosed with probable early Lewy's was accepting in a way few are, and we always could talk about it. Happily for him and for me he died within a year and one half of his diagnosis (his fervent wish) of sepsis and didn't have to stare down a whole lot of deterioration. He actually said he was happy to know of his diagnosis for while he hoped to beat it by dying quick, he was glad to know why he saw the world now so differently. That is RARE.
I would start with telling the diagnosing Neuro psyc MD that your husband, being practical as most men are, needs the doc to TELL HIM in no uncertain terms what he has and what that means and why he must allow YOU now to do executive decisions and functioning for him. This is hard to deny in MD office, tho as Beatty says, most denial is actually part of the medical condition, and may return. But this needs now to be done clearly, by an MD and in no uncertain terms.
I am so sorry to tell you that this is a beginning for you of a very tough journey. I hope you have support and a good medical team, and that you and hubby already put in place the things you need to take over functioning for you both. Consider asking your husband's doctor how how to contact a social worker. I think you may need a nurse manager or other medical help to help you assess what your next moves will have to be, to help you get educated and negotiate "the system".
Begin by watching some Teepa Snow videos which are available free online. This will give you a beginning place in just being able to communicate with hubby.
This is a massive subject, a massive life change you are embarking on, a steep learning curve for you, one with many questions and varying answers and things to try, but you will need support and guidance.
Do try to go to Facebook and look up Vascular Dementia Support Groups. You will get help from those who have been/are there. Do go to Alz.org , Dementia Society of America and any other dot-org societies you can find dealing with vascular dementia. The place to start is in seeking of all the information you can find.
On AC here, go to the top timeline in blue, look for the magnifying glass, click on, go to search anything including Vascular Dementia so that prior questions may help you find answers now.
Best of luck. Come back with any specific questions you find on your journey. We here will try to help.
Again I am so sorry.
Vascular dementia is a strange one, as it affects everyone differently in the early days, depending on which parts of the brain are affected and why.
My mum developed vascular dementia some years after having a stroke. She quickly forgot her diagnosis, after I told her, and would either deny there was anything wrong with her or would be surprised when it was mentioned (thankfully, never upset).
She had a wonderful, dry sense of humour and when I would say, "It's okay, Mum, you forgot about having dementia," she would come back with a quip about "forgetting" and "dementia" - totally deadpan - that would cause an uncomfortable pause until the twinkle in her eye and knowing smile would have us helpless with laughter.
She and her husband arranged their funerals together; I helped Mum because of her losing executive function, as well as her failing memory. She used a lot of dark humour, especially about her choice of song as the mourners leave the crematorium: "Halfway to Paradise" by Billy Fury.
So, instead of trying to get your husband to accept his diagnosis, I would suggest that you tell him you want both of you to make arrangements together because neither of you are getting any younger.
When my stepdad broached the subject, he said that it was important for both of them to know that they'd made plans for what to do if anything should happen to the other one.
Just don't promise to never place each other in a care facility - it would cause guilt if that's what is eventually required. Nobody has a crystal ball to see into the future.
Mum was diagnosed about 3 years ago, but she may have developed vascular dementia before then - it was difficult to tell because of the brain damage caused by the stroke.
Up until a couple of months ago, Mum still had her intelligence and could beat me in a quiz, even though she was unable to make decisions or find her way around their tiny flat.
Then, she started to go downhill rapidly, along with the advanced COPD, which further deprived her brain of oxygen.
Mum died yesterday, peacefully in her sleep with friends and family by her side.
I'm so glad that we discussed her wishes a couple of years ago, as it made making decisions about her end of life care easier and I know exactly what she wanted for her funeral.
Then again he may NEVER get OVER it
It might be up to you to help him get THROUGH it.
You need to do what you need to do to prepare for the future both yours and his.
Talk to him when you are both calm and can discuss things.
What does he want.
What are his end of life decisions.
Are there things that you both want to do that you can do now that you will not be able to do in 6 months, 12 months, 2 years? Do them now
* A person 'asking' a person with dementia what they want' is asking for chaos, frustration, and be in a 'no win' situation.
If you have documented information to the contrary, please provide to us.
Gena / Touch Matters
You'll likely be on your own to decide your future, hubbys not doing any decision making except for probably trying to stymie YOU from making changes. The argumentative attitude can be staggering with dementia, the stubbornness mind boggling. The road is a difficult one.
Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with DH. The 36 Hour Day is another great reference type book you should have on hand.
Best of luck with a difficult situation.
Anosognosia is a condition in which a person with a disability is cognitively unaware of having it due to an underlying physical condition. Anosognosia results from physiological damage to brain structures, typically to the parietal lobe or a diffuse lesion on the fronto-temporal-parietal area in the right hemisphere and is thus a neuropsychiatric disorder. It is common in mentally ill people and in dementia and Alzeimers patients.
Thank you for your sound support. Gena
You cannot change his cognitive functioning, i.e, 'help him move beyond his denial' - he may always be in denial.
* You do what you need to do to prepare for your / his future.
* You do not ask him; he will likely both be in denial, not understand what you are saying/what the needs are - or why. (He may 'live' in present time only.)
* Start to learn more about dementia.
- Google TEEPA SNOW, one of the country's leading experts on dementia.
- Watch You Tubes on Vascular dementia; read books.
* You learn that dementia is learning a new language (/way of communicating).
- There is 'no such behavior as lying to a person w/dementia. You tell them whatever will appease them / keep them calm and feeling as safe and secure as possible, then change the subject).
If it were me, I 'might' start a journal documenting his behavior changes. This might help medical providers to see a pattern over weeks, months, etc. and determine if some medication is needed. At the least, it will help to see patterns of cognitive/behavioral changes.
* Realize that you are grieving in slow motion. You have lost the husband you have known for years, if not decades. Allow yourself to grieve.
- Get into therapy if you need to.
- Find a dementia Association and join a support group (as well - call for info.
* Be sure to take care of yourself "self care" is critically important:
- Get enough sleep
- Exercise / walk / go to a gym / take yoga and/or stretching classes, ride a bike
- Eat nutritious foods; do not 'eat in' your feelings (sad, overwhelmed, exhausted, which is very easy for some of us to do).
- Be willing to FEEL everything you are feeling; don't stuff feelings in as it will adversely affect your own well-being.
- DO rely on good friends, neighbors, church or other organizations you belong to for support (perhaps ask some folks to visit your husband if it seems he is open to it).
Realize he will continue to " believe he knows what he believes he knows" ... he may react in anger, mood changing (depends on his personality type - he may turn inward). When he exhibits a change of behavior, NEVER argue with him. Perhaps say "okay, I understand,' then change the subject and do what you need to do.
Our hearts go out to you. This is not easy for anyone. We are here to support you.
Gena / Touch Matters
You should prepare yourself. Read as much information as you can about vascular dementia, and learn what to expect.
I don't think he needs to accept it. What benefit would that have on the outcome?
For now, simply keep your daily routines and your interactions with him as normal as possible. As his brain begins to fail, he probably won't know the difference. You will see it though. So, it will be up to you to be prepared and do your best to gently guide him through his day to keep him safe. For instance, whatever you can do to keep him from driving when his brain is not working, do that! He will need to quit his job, if he is working, when he is no longer able to function at work.
There will be a lot of changes. Take each day as it comes. Continue to live as normal a life as you can. Imagine how scared he must feel when he is confused. Or when his bodily functions fail because the body is not getting the right signals from the brain. The best thing you can do is help him feel safe. And don't expect him to understand, or try to make him understand.
He won't.
There is one bit of preparation you should try to get in place while he is still able - get the paperwork for Authorized Medical Representative and Power of Attorney, then sit down with him and go through it together. You may want to do this with an attorney who can help explain and answer any questions. If your husband is in denial and feels that this is unnecessary,
that you are trying to take advantage of him in his failing health, you can complete the power of attorney forms for each of you, naming a child, trusted friend, or relative as an alternate POA if either of you should become incapacitated, is just a smart thing for anyone to do!
I wish you well in this journey. I suspect it is you who is having the most trouble accepting this new diagnosis. Yes, it will change your life.
But it doesn't have to change overnight. Keep living as you are, and be ready to adapt to new unexpected changes as they appear. And keep coming back to this forum for guidance. We have all been through it and you can find answers and emotional support here.
That's a great answer.
However, I'm afraid this part isn't correct:
"If your husband is in denial and feels that this is unnecessary, that you are trying to take advantage of him in his failing health, you can complete the power of attorney forms for each of you,"
Only the person who is signing over the power of attorney to someone else can sign those forms and only if they still have capacity.
If the person is unable to go through the rigours of filling in the forms, yet understands what they are signing and agrees to it (they have capacity), then someone can fill the forms in for them to sign. However, they have to demonstrate that they have capacity, that they understand and agree to making someone else their POA for when they no longer have capacity.
With dementia, he is losing his ability to process reality - thus the denial. He can't help you with planning for the future, and there is no point in trying to force him to accept his diagnosis. Just let that one go.
You're in the driver's seat now and the burden of preparing for the future will fall on your shoulders. Your husband will be along for the ride, so-to-speak.
You will be his main caregiver, I assume. So "take the bull by the horns" and begin making the plans that will work for the both of you.
Peace.
I'd rather hear the hard truth than a soft lie.
5 stages
1 - Denial - "nothing is wrong" (stage your sweetheart is in)
2 - Anger - "this isn't fair" or "why me"
3 - Bargaining - "Let's try this and it will get better"
4 - Depression - sadness and realization this is "real" and won't go away.
5 - Acceptance - moving into a place of acceptance with what is the new "normal"
So, you probably can not speed him through his stage 1, but you can be supportive. Let him know that his diagnosis is not going away and that you are there for him. Since you are at a latter stage, you could do research and narrow options to those that are reasonable and affordable. When he progresses to a later stage, he will be willing to plan with you - present your research.
If he seems stuck in denial, talk with his doctor about this. He may not be able to realize his problem(s) if that part(s) of his brain were injured. In that case, get POA and be prepared to make decisions for him.
To him, the visuals and voices are real, very real.
Regardless of whether they are real or not to you,
makes them no less real to him.
You have to find a way to have peace with the delusions too.
When my wife asks about where did her long since deceased parents are at, I'll just say they had to go home. She's good with that. I don't have to give her strife and convince her she's wrong.
We are further along this path and she knows the hallucinations are not logical. Yet, they are still real to her.
But, I do still struggle with the mental abuse of guilt trips and accusations of infidelity. Heck, another woman is the last thing I need in this season of my life. I doubt if I can ever agree with false allegations of cheating.
Hurry if you still need to get legal stuff done. I almost delayed too long and if you wait too long a doctor might deem him to lack capacity to make such decisions. You can't become POA without his agreement and having capacity.
I join everyone saying I'm sorry you are going through this. I see this disease destroying your life just as much as his.