Reply
Contributor

How to cope with spouse who has dementia

My husband has start of dementia. He appears to be alert and oriented but always manages to recall his past. He tells others that his family doesn't want to be bothered with him. He sleeps all day and watches tv all through the night till morning.(6am) while I'm trying to sleep. He doesn't want to eat at the kitchen table, just in bed. One minute he says he can't walk, but then wants me to dress him so he can drive to his favorite place for a cup of coffee. To get to his car he has 16 steps to climb. He doesn't want to exercise, or do anything for himself, when I've seen him dress himself. I try to encourage him to do as much as he can. He likes to be the center of attention, which I can't do cause I do everything in the house, and work part time . He is 83, and I'm 68. I just feel overwhelmed at times, and don't know how to handle this situation . He's also has accidents in his pants, when he comes home from having his coffee, juice. I know he's embarrassed, but wear a pull up then, which sometimes he does. Do I need to get a power of attorney, or is there another form to obtain due to his memory?

0 Kudos
2,226 Views
16
Report
Periodic Contributor

Dealing with a person who has dementia is quite difficult. I can truly understand your situation as my father is facing dementia. Caring for him poses many challenges for me and my family. I have found about a dementia care facility in NJ They have a memory care staff that focuses on each resident’s specific needs. I am sure my father will find it helpful.

0 Kudos
1,199 Views
0
Report
Contributor

I have a question, what is AD? It would be helpful to write the full name of an acronym.

 

Thanks. Lydia

Conversationalist

@Harmony0914, AD is short for Alzheimers dementia/desease.  I often screw up the spelling and this spell checker usually doesn't flag the misspelling.  We don't know a great deal abut it. 

 

What some scientists suspect is some of us don't sleep long enough for us to completely remove all the b-amyloid, a thinking waist product, from the previous day while we sleep.  If this happens often it starts to deposit on your brain.  When it gets thick enough, it starts irritating your brain.  Taking anti-inflamitory analgisics at this stage will slow the AD progressinon. After years of this the inflammation triggers an auto immune disease.  We have drugs that can deduce autoimmune disease.  The disease agressively attacks and distroys your brain.  After about 10 years of distruction the first inklings of symptoms may be drecognisable to someone who knows what they are looking for.  The first is getting mild confusion if they are moved to a new place to live. The next is they start making bad decisions.  Next they become irritable and oppositional.  The last is they start to lose short term memory.  By that point their brain is nearly distroyed and anything done for them is really just to make you feel better about yourself.

 

Helpful interventionm must occur before sumptoms of any kind.  Then you have a chance to prevent or greatly delay progression.  Once the autoimmune disease starts it is no more curable than any other autoimmune disease. The best you can do is slow it down. This is all a decade before even the slightest symptom. By slowing down the progression even 25% will mean you may avoid being a vegitable completely.  Maybe at the end you can't drive but you should be able to walk and fend for your self. That is a massive savings over 24/7 care AD patinnts need in their last few years.  That is often 6 figures a year. 

 

I advocate going to a nerulogist at 65 - 70 years of age and get an MRI.  It is painless and often free.  That can uncover any problem long before it is a real issue.  These persons can avoid getting it.  If they see something, it could take a year before they get to the bottom of it but can deal with the problem while it is small and correctable.

 

Anyone who has spent more than 2 hrs in an AD unit knows specialized care is invaluable.  They will be happier and safer than at home. 

 

Most AD have an immune disease and regular dementia as well.  Walking is good for dementia so it is good for AD, etc.  

0 Kudos
1,178 Views
2
Report
AARP Expert

Hi Ron!
You have done a lot of research and thinking about dementia! Thank you for sharing your wisdom! I think you have some good tips to share, and I also just want to add that all recommendations be run by a physician who knows a lot about dementia, which can be a neurologist but can also be a geriatrician or a geriatric psychiatrist.
I also think that some people with dementia do better at home, so i hesitate to share your opinion that 'they will be happier and safer than at home.' It really depends.
But i am glad you posted. If you have time and the inclination, i'd love to hear how you came upon such a wealth of knowledge?
Jane
0 Kudos
1,172 Views
1
Report
Conversationalist

I suggest a neurologist.  My MD is tops but was completely misinformed.  There were advances she was not aware of.  Her cautions were sound since she is smart and well read for a PCP.  That is why I suggest only seeing an expert.  The truth is you can easily and painlessly get a clean bill of health that will be accurate.  If they find something that will lead to more invasive testing but then it is necessary.  The biggest point he made is early diagnosis is at least as important for this as for cancer.  By the time your symptoms are obvious you have been destroying gou brain for probly 15 - 20 years and little can be done.  Very early detection means you may avoid the disease all together or at worst have a mild case in your last years alive.

 

0 Kudos
1,112 Views
0
Report
Honored Social Butterfly


"...I have a question, what is AD? It would be helpful to write the full name of an acronym. Thanks. Lydia..".

Alzheimers dementia. Often, incorrectly, many people don't say dementia. They simply think any dementia is Alzheimers and simply call anyone with dementia as having AD. The poster was trying to distinguish that.


"...Why is everyone a victim? Take personal responsibility for your life..."
Conversationalist

Have you taken him to a neurologist?  You might get better help from one of those.  I found mine to be at least 10 times more informed than an internist or shrink.  Have them do a neroquant that will measure his dementia.  Without that you are running blind.  You have no clue except for symptoms if the meds are working.  The faster you get to the right treatrment the better. Much of the symptoms are due to brain damage which can't be reversed.   

 

Take walks.  That can slow or reverse dementia by getting the blood flowing in your brain better. When they are far gone, music can excersise their brain when nothing else can. 

0 Kudos
3,294 Views
1
Report
Contributor

Contact the Alzheimer's Association in your area. There are probably caregivers support groups where they can help you. I know, just knowing there is someone nearby helps emotionally. There maybe be adult daycare centers who are experienced in handling this giving him the intellectual stimulation he needs and where you can get some respite. I've been through this. My husband was diagnosed 12 years ago and 2 years ago I placed him in a memory care facility.

If he resists getting tested, tell he that both of you are being tested (I did!) and see how that works.
0 Kudos
3,730 Views
0
Report
Community Concierge

Agnesrn,

We also have a very thorough guide you can use to help you on this journey. Caring for Someone with Dementia - it will walk you through the steps you need to take from clarifying the diagnosis to caring for yourself. 

Please keep us posted. 

AARPJen
Caregiving Concierge
0 Kudos
4,061 Views
0
Report
AARP Expert

You've received some great advice. I'll add my 2 cents.

 

Since you're married to him, you don't need guardianship, but, if he has grown children from another marriage, or there is anyone else who might contest your decisions, it would be a good idea. As someone suggested, take him when he's more or less logical. Although that doesn't mean he'll cooperate. In which case, you need two physicians to declare him incompetent to make his own decisions. Which is tricky. So you'd need to wait until he is more confused. 

 

Is there anyone in your social circle and kinfolk circle who can help you? One Saturday afternoon a week, take him out for a spin, to go bowling, to sit in a coffee house (and remind him to pee before you leave)?  Do you belong to a faith community?  Can you hire someone as a companion if all else fails?  Four hours once a week might give you a lot of respite. 

 

You might want to see an eldercare lawyer without him to go over finances. How to manage your money now, in view of his future, and  yours. Is he a veteran? Does he have long term care insurance? You need to protect yourself and your future, especially since you are 15 years younger. I'm 12 years younger than my partner, who has MS, so i can relate.

 

He sounds like a handful. Do you have individual support to shore you up, for you to be totally candid with instead of keeping up a brave face? Perhaps a therapist you see occasionally for venting and problem solving?

 

What is your most immediate need?

 

Jane

Honored Social Butterfly


@JaneCares wrote:

 

>>He sounds like a handful. Do you have individual support to shore you up, for you to be totally candid with instead of keeping up a brave face? Perhaps a therapist you see occasionally for venting and problem solving?

 

What is your most immediate need?

 

Jane


Jane you have a lot of experience in this area so I have a question for you.  

 

These posts often indicate that the individual needing care, pretty much runs the show.  They determine what others will do for them.  Where they will eat, when they will go out, what they will wear, etc.  I do not understand this at all.  They are not in a position to determine much of anything so why do the caregivers not make appropriate changes?  

Life's a Journey, not a Destination" Aerosmith
0 Kudos
3,881 Views
3
Report
AARP Expert


@nyadrn wrote:

@JaneCares wrote:

 

>>He sounds like a handful. Do you have individual support to shore you up, for you to be totally candid with instead of keeping up a brave face? Perhaps a therapist you see occasionally for venting and problem solving?

 

What is your most immediate need?

 

Jane


Jane you have a lot of experience in this area so I have a question for you.  

 

These posts often indicate that the individual needing care, pretty much runs the show.  They determine what others will do for them.  Where they will eat, when they will go out, what they will wear, etc.  I do not understand this at all.  They are not in a position to determine much of anything so why do the caregivers not make appropriate changes?  


That is a VERY good question

 

I've often reflected to myself that we are ALL toddlers in some ways: No one likes to be told what to do, whether we are 18 months old or 88 years old. And the path of least resistance for caregivers is to do what the person with dementia is WILLING to do. Even a toddler at age 18months and 35 pounds can't really be physically forced.  Once they have teeth...

 

So if the person with dementia doesn't want to eat, that's tough. They might want to live on hostess twinkies. How do you get them to eat healthily?  How do you get them to bathe? For some reason, a whole lot of people hate to bath. They feel like they might fall, they get cold... 

 

The caregivers find themselves trying to avoid the tantrum of an 88 year old....

 

However, with training and support, caregivers can learn how to negotiate more successfully with their care recipient. Often counter-intuitive, the advice ranges from: 

1. going with a delusion. If the care receipient sees a monkey in the corner, invite them to tea. keep it light. what is the monkey wearing? do they need new shoes? make the person laugh and change the subject.

2. if the person won't take a bath, try bribery. try making the bathroom super safe. try bubbles. call it a spa...

 

If the person is verbally abusive, that is harder, emotionally especially, but what the heck: "If you call me names, you are not getting any ice cream...."     Behavioral training works pretty well. But like training a dog or a child, it takes consistency and a strategy.

 

does any of this make sense?

 

Jane

0 Kudos
3,462 Views
0
Report
Honored Social Butterfly

"....These posts often indicate that the individual needing care, pretty much runs the show.  They determine what others will do for them.  Where they will eat, when they will go out, what they will wear, etc.  I do not understand this at all.  They are not in a position to determine much of anything so why do the caregivers not make appropriate changes?...".

 

I know this was posted for Jane, who may still respond. Since we went through this in our family, my response would be that your questions assumes one can reason with the person with dementia. We couldn't do that with my mother. She insisted on driving, and had some accidents which could have been worse. Took away the car keys. Then, she started walking, and getting lost, in the neighborhoods. She would become very angry at not getting her way in several areas. What's the answer? Put her in a locked room? You're trying to get some kind of routine going with a dementia person, but that may not be possible. That means they are in charge, and you have to cope with ever-changing behaviors and demands. 


"...Why is everyone a victim? Take personal responsibility for your life..."
Conversationalist

Your best point was the inability to reason with the demented.  This goes double for AD.  The first thing to go in AD is reasoning not memory.  Before any symptoms they start making very bad decisions. They are defensive and get angry easily. They reble against their care givers.  The garden varity dementia patients are much easier to deal with.  They are not very reasonable just because they have holes in their logic and memory but they are not nearly as oppositional as AD.  My mother died of AD and my wife's uncle who we care for is dieing of regular dementia.  On Christmas he went to the hospital because he forgot how to swallow.  We temperarly over ruled his living will to give him IV for a few days and he came around. He is doing better now but I doubt he will see another Christmas.

 

If you suspect a loved one may get dementia, your first line of defense is to get control of their medical proxy before they get oppositional. Treatment is very effective if it starts before any symptoms.  The later the treatment the less effective it is. Once it is full blown, is may be more merciful to stop treatment. 

0 Kudos
3,556 Views
0
Report
Regular Contributor

It is difficult to live with a spouse who has dementia. Try to find activities that you both can share. If he is mobile, let him accompany you to e.g. shopping, movies etc. based on your level of comfort. You can listen to music at home and watch televesion. It is also important to find time to enjoy some of your previously enjoyed activiites alone or with your friends. If your husband can join you with friends at social activiites that would be great. Choice friends and family members that are understanding.  It is also important to discuss his medical and financial choices when he can make cognizant decisions. 

Honored Social Butterfly

I'm sorry for the situation you & your husband are in. I think the first two steps to take would be to have him fully evaluated medically, to understand what you're dealing with. Second, meet with an estate attorney, to discuss power of attorney & any other precautions you should take, while your husband still does have his faculties. If you notice that he's better one time or the day than another (i.e. mornings), schedule the appointment when he'll be at his best with the attorney.


Registered on Online Community since 2007!