Understanding vascular cognitive impairment

Care4Mom2

Is there anyone here who has experience with vascular dementia? 

Last July (2020)  my husband was diagnosed with Mild Cognitive Impairment. He started recognizing his short-term memory issues around February, 2020. I had been documenting his issues since 2018, though. But, I think they started well before then. There have bee gradual changes.

 I spoke to his doctor around 2017 about my concerns. The doctor’s response at that time was that when my husband started recognizing the problem, we could come in together. Three years later, he was diagnosed....

He had an MRI, which showed small vessel changes. But, the neurologist could only diagnose MCI. She said there is a fine line between MCI and dementia. But, she did tell me recently that it would eventually lead to dementia. My husband would need more extensive testing to allow a name to be assigned to his condition. He is refusing to do that (even for me, as I have asked) because he is afraid the doctor will say he cannot drive anymore....

Besides his short-term memory issues (where he asks me the same thing several times), his big problem has to do with money — balancing the checkbook, and really comprehending anything to do with money. He refuses to allow me to help him pay bills. When asked why, he told me that I do too much already, but told the neurologist that it was his personality (that is more like it).  He has paid bills twice, and/or has entered a transaction twice in Quicken (where he has to keep track of every cent he spends and on what)... THAT I certainly do not want to do! 

He used to do our taxes, but several years ago, he said he can’t do it anymore. I think his cognitive issues may have started back then....

We are in the process of moving to another state. We are building a house. I have to take care of everything. He said he is on board with everything, but a week after I explain what we have to do, he doesn’t remember. Sometimes he says he remembers after I tell him, but sometimes not. He said he needs it written down so he can understand, but that doesn’t help. I get very frustrated. He wants to be in control, but then he can’t be....

He puts things away in the wrong places where I have to go through every cabinet to find something. Things have been in the same place for the 30 years we have been in our house.

I have researched his condition and really feel that he might have vascular cognitive decline. I think his BP is too high — most times over 130/80. He couldn’t donate blood recently because his BP was too high — 140/104... Years ago he was on BP meds, but for some reason he was taken off of them. He was very heavy at one time, so maybe after he lost weight, his BP went down. He doesn’t remember why the medication was stopped, though.

I understand with vascular dementia, there can be personality changes. Are they normally changes for the worse? What I feel is that he is much more insecure. He constantly asks me if he can help me with something, which in itself frustrates me. I will be walking in the house with the mail, and he will ask me if he can help me. I try to give him something to do when I think he can do it. He has to stay in a room where I am, or he stands and waits to see where I am going to go. Then he goes with me. He can’t think for himself. He has to ask me everything.

Sometimes I really run low on patience. I just don’t know what to do and what to expect.

Can anyone help me?

Crushed

My mother had vascular dementia confirmed with brain necropsy.  FWIW most of the population would kill for a BP  of most times over 130/80.

My concern is that you are occupied with essentially trivia when fased with  deadly and life altering condition. Are you building a house suitable for a handicapped person in a wheelchair   close to high grade medical care? and medicaid nursing homes

If not you are as they say swallowing a hand grenade

You need to get legal help and do medicaid planning.  Dementia is for most people is a financial disaster  My wife's care costs $150,000 a year.  If you don't have that you will need Medicaid unless you have very good long term care insurance. 

My mother needed hands on 24 hour care for 7 years. 


  
 

Cubbie

Hi Care4Mom2. I unfortunately have some experience. My husband was diagnosed about three years ago. Short term memory is somewhat non existent for my DH. Repeated questions is an every day occasion. I took his keys away when I noticed his reaction time both physically and mentally. I do all financials, home maintenance, medical appointments, etc. He had a serious delirium episode early on but has rallied back. He was hospitalized 7 times in one year, but once again rallied back. Unfortunately, we sometimes need to be the bad guy. His physical condition has deteriorated but he is still mobile. The doctors have determined that he has had mini strokes and that he needs 24/7 care. I have a nurse come in once a week to give me a break for a couple of hours. Of course he doesn’t think he needs anyone here if I leave, but should he fall I would not forgive myself. I did meet with an attorney early on and get our wills in order and POA with our son in second place should something happen to me. He constantly thinks he can do things he can’t. I change the subject and don’t argue because I can’t win. Sorry you have to be here. My best to you!

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Care4Mom2

Thank you for your concerns. I have all of the legal papers taken care of. We are moving to a one-level house. We currently live in a townhouse. Both of our children live out of state — 5 to 8 hours away. When we move, we will be closer to one of them (2 hours away). It is an active community, so he can stay social, which is what the neurologist suggested. There is also a good medical system there.

My husband is a veteran and has set up everything with them, so he would have care if he/when he needs it. 

I took care of my Mom for 2 years in her home. I know it will be a lot harder with my husband if he requires that much care, since he is certainly physically stronger than my mom was. 

From what I have read, a significant number of VCI patients end up having a stroke or heart attack from the high blood pressure. The MRI showed no signs of a stroke or bleed. The life expectancy, after symptoms occur, is 5 years (though some say 3)... I think we are passed 3 years from onset... 

After watching my mom (who had aphasia) die “of natural causes,” I, personally, would rather go out with a massive heart attack...... It was cruelly to watch...

Care4Mom2

Thank you. All legal documents are taken care of. My husband has also registered with the VA. 

We are moving to a one-level home that will accommodate a wheel chair, if need be. We currently live in a townhouse with a lot of stairs...

Right now, we have two joint bank accounts. Because the state we are moving to, does not have any of our banks, we will be switching to one (nationwide) bank. I am thinking that will be a good time for me to take over. My husband has told me before that I need to do the bills. I was fine with it. I also told him a few times that I need to do it. But, when it comes down to it, he doesn’t want to relinquish control. His internist knows that is the kind of person he is, and knows it can be a problem. Fortunately, we do not have major bills. Health insurance is automatically deducted from our pensions. The neurologist said he is very intelligent (educated), and those type of people tend to score better on cognitive tests than they really are... No sure what all the means....

Care4Mom2

We are a long way away from even qualifying for Medicaid.... Not that we are wealthy by any means... My sister could not get Medicaid, and she has been disabled for 30 years!

Crushed

Care4Mom2 wrote:

My husband is a veteran and has set up everything with them, so he would have care if he/when he needs it. 

 

My wife was a VA doctor There is a LOT of mythology out there as to veterans nursing home care as opposed to health care   From the VA
 

Residential Settings and Nursing Homes have different eligibility requirements for each setting. The VA does not pay for room and board in residential settings such as Assisted Living or Adult Family Homes. However, you may receive some Services at Home and in the Community while you are living in a residential setting. The VA also provides Community Living Center (VA Nursing Home) or community nursing home care IF you meet certain eligibility criteria involving your service-connected status, level of disability, and income.

Factors that Affect Your Costs for VA Services

When you enroll in VA health care, your (1) VA service-connected disability status and (2) income will be reviewed to determine if you will be charged a copay for VA health care services and VA long term care services. Long term care copays are different from standard VA health care copays because they are not charged until the 22nd day of care. Copays are NOT charged for Hospice Care provided in any setting. However, the VA is required by law to bill any health insurance you may have (except Medicare) for treatment of conditions that are not service connected. Payments received from your insurance company may reduce the copays that VA bills to you.

Frankly  Many Veterans need medicaid to pay for long term care

While the Aid and Attendance benefit can be applied toward nursing home care, the maximum benefit amount is far less than the average cost of nursing home care

 .

Crushed

Care4Mom2 wrote:

We are a long way away from even qualifying for Medicaid.... Not that we are wealthy by any means... My sister could not get Medicaid, and she has been disabled for 30 years!

Long term care qualification is totally different.  Dementia patients routinely need long term care that disabled people do not. 

Eligibility for Medicaid may be figured differently for residents of an institution, and therefore access to Medicaid services for some individuals may be tied to need for institutional level of care. 

 https://www.medicaid.gov/medicaid/long-term-services-supports/institutional-long-term-care/index.html

Crushed

Care4Mom2 wrote:

We are moving to a one-level home that will accommodate a wheel chair, if need be. We currently live in a townhouse with a lot of stairs...

Does it have a handicapped bathroom?  eg elevated toilet Wheelchair turning circle room for a lift or a roll in shower  grab bars everywhere.  nothing under the sink ?

Its much easier if you are building a house

 

Ed1937

My wife was diagnosed with vascular dementia 3 years ago. One of the first things she lost was the ability to do basic math. You have to find a way to take over the financial part of your lives. 

Most of the things she lost is in tune with what many others on the forum experienced. Stay with the forum, and you will get questions answered, and you will get understanding and support that you can't easily find in the outside world.

ElaineD

Dear Care:  I recognize several things you are describing.  My husband is exhibiting clear signs that he has MCI, and has for 4 years or more.  Our sons saw the signs at least two years before I did.

Right now the hardest part is when he puts things away in the wrong places.  I walk with a walker and wear braces, and still am very unsteady, so it is hard for me to search out where things might be.  He is also very tall and tends to stash stuff on very high shelves or on top of the cupboards!

He also collects an amazing amount of 'things' that he can't/won't part with.  Our apartment is strewn with this stuff.  I've had to 'give up' my need for tidiness and order, for sure.

These are other changes (besides memory) that often accompany dementia:

1. Apathy.  General apathy about people, places and things.

2. Loss of Empathy. Doesn't care about others much, if at all.

3. Loss of Social Filter.  Says/does inappropriate things in social settings.

4. Personality changes.  In our case my husband became much more critical, angry and cruel.  'Fortunately' that stage only lasted about 2-3 years.  It just about did me in.  I was ready to leave him at last.  Now he is calmer than he ever was in his entire life!

5. Loss of executive function.  Difficulty carrying out an activity involving a series of tasks, such as following a recipe or paying the bills.

Vascular dementia runs in my DH family (mother and sister, among others).  His blood pressure is very well controlled and always has been.  I know this has helped delay his VD.

His mother had a devastating stroke while she was in the MCI stage, and that confined her to a wheel chair and she couldn't really speak.  So this overrode the signs of dementia.

His older sister, however, had the entire stages of VD, and was in Memory Care when she died recently at age 91.  My husbands signs of dementia are exactly where hers were at 82.

My DH knows he has memory problems (discussed with his Primary Care MD) but attributes them to being 'normal for his age'.  They are not normal for his age.

He has had no testing.  He is still driving.  I ride with him two or three times a week, and he's doing well with driving, really.  I know he will never give up driving without a huge fight.  

I am relying on my younger son to 'take away the keys AND the car' when the time comes.

It will come.  

Two years ago we moved to Independent Living in a Senior Living Community that has every imaginable convenience and service.  We moved primarily because I am severely disabled and had become house-bound in our lovely home.  

The staff here is very attentive and professional.  They recognized that my husband has MCI without my telling them!  So they are alerted and are observing him.

There are both Assisted Living and Memory Care facilities on our grounds, and I know several women here who have moved their LOs to AL or MC.  The flow is rather constant here.   The average age of residents in Independent Living is 85, so we also lose residents to death, several times a year.

I spoke with our financial advisor. Because all of our assets are in 401k accounts we cannot put them in trust without paying a huge amount of tax all at once.  

So we will 'spend down' my DH's share of our assets until my DH qualifies for Medicaid.  We each have 6 years of Long Term Care Insurance, and that may prolong the time until Medicaid is necessary.  And  I may live long enough to qualify for Medicaid, myself.

I have personally assisted someone to qualify for Medicaid, and I know what it takes.  It isn't easy, but it's doable.

I am 79 and my DH is 82.  Because I'm so disabled, I won't be able to care for DH if he needs physical care (toileting, showering, dressing) or if he begins to wander or has severely disruptive behavior (anger, shouting, threatening).

I don't think home health care (available on-site, for a fee of course) will really be able to address our needs.  And it will be more cost effective for my DH to move into Assisted Living or Memory Care (if appropriate).

I am safe here (I have an emergency call button on my Apple Watch, which I wear at all times) and my son is a psychiatrist and his wife is an occupational therapist so I have very good,  understanding, family support less than 15 minutes away.  They are both committed to helping us and I know they are here for us.

I've always managed our finances, buying and selling houses and cars, moving from MA, to GA, to TX!, and now to North Carolina, and then into our retirement community.  My DH was happy to turn over this responsibility to me early in our marriage of 59 years.  

You have a great deal to manage with building a house, moving, and managing your husband!  You will take it a day at a time.  

The biggest 'issue' for you is your DH's driving.  It is so hard to realize how dangerous his driving may be.  Driving is the most dangerous activity that most of us will ever do.  And that's without dementia.

Welcome to our forum, Care4Mom2.

Elaine

Care4Mom2

Thank you, Elaine. I am 64, and my husband is 73. What I am starting to see and understand sounds like what you have gone through. We are moving from Maryland to NC... Fortunately, the new homes are set up for what adults may need in the future — chair height toilets, and zero-step showers, etc.

When I took care of my mother, I learned a lot about long-term care and Medicaid. She never qualified for Medicaid. There was an 8-year wait list for a Medicaid exemption in assisted living facilities (or even when they are kept in their own home), anyway. She was 93 then... I knew she wasn’t going to be able to take advantage of that... She did not have full-blown dementia, but the aphasia came under the same umbrella. So, she would have been placed in a memory care unit. I am glad we didn’t go that route, and that we kept her in her home of 64 years. I was the main caregiver, and I did have some outside help to relieve me. It wasn’t cheap, though. She was 95-1/2 when she passed. It was sad to watch. 

It sounds like you have a lot more on your plate than I do. I wish you well.

Susan

jfkoc

Here is a site that will help you with your home;

https://www.caringvillage.com/2016/01/18/how-to-implement-ada-requirements-in-home/

Care4Mom2

Crushed, 

The new home will have comfort height toilets and the shower has no step. Just being on one level will be a benefit to both of us. My husband is very mobile and athletic. I cannot picture him in a wheelchair, anymore than I can picture myself in one. That we will have to deal with if we need to, even if it means moving again. If his MCI or VCI, whichever it is, continues as it is, the changes have been very subtle. He is in Aricept. Maybe that is helping slow things down. I don’t know. He thinks it is helping... 

It is good for me to hear what others have experienced. I wish my husband would have more testing so that I know what to expect. I had a friend who had vascular dementia. She went downhill fast, but that may have been assisted by a UTI. She was in assisted living and her family was told by the facility that she couldn’t stay there any longer... She passed away a few month later.... 

No one knows how things will go. But, I a, glad we have all of our legal stuff taken care of. That was done recently.

Thanks for your replies.

ElaineD

Dear Care4Mom2

Welcome to North Carolina.  We are in Cary, part of the Raleigh-Durham-Chapel Hill Triangle.

I do think, by the way, that your decision to build a new home with accommodation for handicaps is right.

I NEVER could imagine myself with such crippling nerve damage to my legs (my immune system is the culprit.)  It didn't start until I was 65, so that is somewhat of a blessing.  I danced, skied,  travelled, spent wonderful time with sons and grandchildren......and then slowly I lost all of that.  The hard part is that I won't be able to help my husband when he is past the MCI stage, I'm afraid.

It seems to me that you are as prepared as any one can be.  I find the HARDEST part of living with Dementia is not managing responsiblities and complex decisions, it is  experiencing our LOs changing, losing skills and memory.

Love, Elaine

Care4Mom2

Elaine,

Dementia is a hard thing, for sure. The hardest part for me is that I want to understand what is going on, and what to expect. I guess that all comes with wanting to know the actual diagnosis! I did the same with my mom. Hearing what you experienced with your husband certainly sounds similar, and has been helpful

Our son is in Raleigh. We will be in Leland. At least I will be close to the beach!

Take care.

towhee

Care4Mom, what your doctor is looking for to diagnose dementia is change over time. MCI doesn't get worse, dementia does. Teepa Snow has a good youtube video talking about the different dementias starting about twelve and a half minutes in. Search youtube for Teepa snow What is dementia. It was a lecture sponsored by Senior Helpers. It might be too early for your doctor to be able to diagnose the type easily, even if your husband would do the tests. 

General anxiety is common to a lot of the dementias, and what you are seeing with him following you around is called "shadowing". Dementia Careblazers has a good youtube video on shadowing. 

Good luck

Care4Mom2

Thank you so much, towhee!