July 20, 2011,
L.P. asks from Uniontown, PA on July 20, 2011
Living with Dementia...
Ok, ladies, this is a new area for me, so I need to draw from all your experiences.
My grandfather (79) was hospitalized about 10 days ago for a mental health evaluation due to some recent episodes of confusion, bizarre behavior, etc. (i.e. roams the house all night, put his glasses in the silverware drawer, forgot to turn the shower off and flooded the basement, was going to nail the basement screen door shut, but had no idea why, that kind of stuff...)
He has a lifelong history of depression/anxiety/panic attacks, but he vehemently denies that he is or has ever been depressed. Refuses any and all anti-depressant medications. He has threatened suicide almost daily for the the past few years. He does have some legitimate pain issues (back injury, interstitial cystitis, prostate issues), and he does take one pain pill daily for pain. He also takes a nerve pill, in addition to a host of other drugs for his other conditions.
He lives with my 79 year old grandmother, who for all intents and purposes, has her faculties (still drives, isn't confused, etc.) She is slowed down by severe arthritis, and has trouble hearing, but other than that, she's in good health.
Prior to the bizarre/confused episodes, he had been living a pretty miserable existence with my grandmother, but they managed there together (he doesn't leave the house, except for an occasional doctor appt.) My grandmother was able to deal with him for the most part, other than being really beat down by his depression and constant threats of suicide. Physically, she was able to care for the house, cook for him, etc., and he didn't require help with activities of dailly living.
So back to the present. He is currently still hospitalized, but set to be released HOME on Thursday. He is diagnosed with dementia, and has been stabilized on medications for it. His doctor believes he is stable enough to come home, so long as whomever is home with him feels comfortable with that, which my grandmother wants him home, so she says she is.
Problem is our family is kind of in 2 camps as to whether it's realistic to think that he can live at home. There are those that feel he belongs in a home, and my grandmother will not be able to care for him. Then there are those of US that feel like we should at least let him try to be at home, and if it turns out that he is not well enough, or my grandmother can't handle whatever increased responsibility she may have, then we look at other options.
This is quickly turning in to major family drama.
If you have any experience with dementia, do you think that it is reasonable that my grandpap might be able to function well enough at home to be there with my grandmother? As I said, he has no physical ailments that require anyone to care for him. He just needs what he always needed, fed, basically.
I hate to keep going on. I know this is too long already. We are having a "family meeting" tonight, and I just need some insight before I open my mouth. If it's unreasonable to think he can be at home, please tell me.
Words of wisdom? Insight?
So What Happened?™
Thank you, ladies. It's a lot to think about, and you have definitely got me thinking about some things that I hadn't thought of. Thank you again.
D.B. answers from Charlotte on July 20, 2011
L., I think that you all need to get some in-home care for both of them. Is what the doctor gave him Aricept? (Or the generic equivalent?) It will help for a while, but then it won't help anymore.
In-home care is the best decision for people who do not want to be taken from their homes. When it is not enough, then the idea of another home, assisted living, should be considered.
I don't think that you all can make him leave his home. Not now while he still has all his faculties.
S.B. answers from Houston on July 20, 2011
My mom. She was diagnosed five years ago with Frontal Temperal Dementia and Alzheimers. My dad took care of her, then had home nurses come to the house and finally last September put her in a nursing home. She cannot communicate, cannot walk and now her neck mucles are weak and her head falls to the left side. I would not wish this disease on my worst enemy. This is not my mother. While she sort of looks like mom, she isn't. In my mind, she died 2 years ago. It is SO DAMN hard to watch!
I would suggest having him come home with home health care coming in daily to help him and grandma. That way the family can gage how much help they need.
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S.H. answers from St. Louis on July 20, 2011
one of our neighbors tried caring for his wife thru her dementia. It was physically & emotionally exhausting for him.....& he was a very active elderly man.
Many, many times she came to our door & asked for our help. Each time the intruder in the house was her husband. She was completely freaked & fearful of the "stranger"....& yet she recognized us. If we were unavailable, then it was the police having to deal with her.
None of us realized how much of a toll this was taking on the husband.... until the day he committed suicide behind their shed. It was heartbreaking to learn how much he needed help & never, ever asked his kids for it. & in their defense, they were regularly in/out of the home.....& knew bits/pieces of it, but still not the whole story. He hid it well.
I am sharing this with you....simply as a worst-case scenario. If your decision is to let him stay at home.....you will need to be absolutely vigilant in monitoring what is going on. The wife was fully capable of self-care & did not require day-to-day personal help....which is "why" she was still at home. The husband was responsible for all duties in/out of the home & was happy to do it all. It was only when her memory zoned out that she became verbally/physically abusive.....until she reached the point where the memory was "gone" most of the time & life became Hell for both of them.
Please, please be very careful in making this decision. My best friend went thru this with her mom...& it was a rapid descent - - as opposed to our neighbor who's still alive & now in a home. Strength & fortitude being sent your way......Peace.
.....one more thought: would your gma be interested in selling their home & moving into the same facility? That is an option in today's world.....
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K.L. answers from Des Moines on July 20, 2011
I don't have much advice for you...my grandmother had demetia, but I was only 24 and living 3 hours away at the time. So...I didn't get to see too much of it. What I did see was just her being forgetful...calling me my sister's name. But, it got pretty bad when she had a stroke and had to go to the hospital. She would yell at the nurses, rip the IV out of her arm, try to leave. It was tough on my great uncle who was the same age, in great health, lived with her and helped take care of her. She thought my uncle was her dead husband. She was talking about some huge secret that she couldn't tell anyone...that's quite the joke in our family now...what the hell was she talking about?
Towards the end, she had to enter assisted living. Which she hated, but unfortunetly, she wasn't there for long. I've done a lot of research/school papers on alzeimers and demetia(my other grandma had alzeimers) and they say that these diseases are much harder on the people taking care of the patient than the actual patient. Most of the time, they relive the happiest time in their lives. They think their hubby/wife is still around, still young...as the case with my grandma anyway.
Sorry...not much advice...mostly just wanted to say good luck.
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L.W. answers from Dallas on July 20, 2011
I've worked in several nursing homes as an activities director and am familiar with this type of behavior. The concern with someone with dementia is a safety issue. He could start cooking something and forget about it on the stove and the next thing you know the house is on fire. He could wander off thinking he's going to the store or something. Even though your grandmother is of relatively good health, she is not going to be able to maintain his care for a long period of time. A lot of people with dementia can get combative because they tend to think they are capable of doing what they are doing and can't understand why you are telling them no. If I were you maybe look into have someone come out to the house to assist him in his daily needs. Maybe someone who could help him as well as help your grandmother some around the house. If you need to focus it on the latter when speaking to your grandfather about it. If he thinks they are there to help your grandmother, he might be more willing. If that doesn't work, look into an assisted living place. He will have his own apartment type room but be able to get the help when needed. And the last step would be a nursing home where there is more hands on care. It's a difficult situation all the way around. You want your grandparents to be safe. Maybe speaking to the social service department in the hospital will help give you some other ideas. Also, there are such things as adult day cares. Not sure if they have them in their area or not but you might check into them as well. Good luck.
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A.C. answers from Columbus on July 20, 2011
I'm sorry that this is happening to your family.
I would urge your family to explore options like putting them both in an assisted living facility. I don't mean a nursing home---I mean a place where they pick out their own condo, and can go to the center for meals and get help in the home as needed. These kinds of places generally offer more assistance as the person/couple's status changes; so if one or the other gets worse, they can go into a more intensive assisted living area of the facility, etc.
If they can be convinced to do this now, while they are still able to make the choices, it will be more empowering for them.
I would also urge you to contact your local department on aging, and ask the doctor for other resources/avenues.
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R.R. answers from Los Angeles on July 20, 2011
My family just went through this a couple of weeks ago and my heart goes out to your family.
My Dad is 86 (day after tomorrow) and developed Sudden Onset Dementia about 6 weeks ago. Without his medication he is delusional, (sees and talks to my grandfather who died 44 years ago, for instance) has bizarre hallucinations, (saw my 10 year old nephew flying outside his 4th floor hospital window and to this day will not accept it didn't happen) and cannot control his behavior (he hit the nurses several times in the hospital and had to be physically restrained and sedated.)
He is also dying from kidney failure, and we just found out yesterday he has a UTI. He takes meds for diabetes, his kidneys, high blood pressure, blood thinners, antibiotics much of the time, his dementia medicine, and it changes every few days so is a bear to stay on top of.
We initially were told he was too ill and required too much care for the family to provide, and would need to be placed in a nursing facility. We were looking into placing him and Mom together. Then 2 weeks ago yesterday (insurance was running out) when my sister went to see him she was told that he would be sent home that Friday, and it was a big surprise to us all. My sister and BIL took two 1-hour training classes, were shown how they would need to care for him, and a shower bench was delivered so he can shower more easily.
He cannot do anything for himself other than go to the bathroom, and he makes a mess doing that so we are cleaning up after him. He can dress himself with help. He wets the bed (even though he wears diapers) so it's changed every morning, we take turns fixing meals for him and Mom, (who has health problems of her own and cannot help) and our house has been consistently filled with a social worker, home health nurses, physical therapists and occupational therapists these last almost 2 weeks.
Everyone but the social worker (who can come whenever she feels it's necessary) will cease coming at the end of next week, so we will truly be on our own. I have fibromyalgia and a 27 month old, my sister has diverticulitis, my BIL works 12+ hour days...and realistically we think the time to place Dad in a nursing facility will come quickly, because while yes, there are several of us who share a home with him and my 78 year old mother, it is HARD to care for him.
He has always been a stubborn man, but now with the dementia he is many, many times worse. He is also very highly and easily agitated over the tiniest things, right now he is angry because he thinks his home health nurse just walked in the house this morning because he didn't see us let her in. We've told him we let her in, and that we know her (she's been caring for Dad off and on for about 2 years) so if she did just walk in that would be OK, but he is very mad and won't let it go. He will do this all day, and no meds are able to help with it. And, he requires 24-hour observation as he "forgets" to breathe, and someone needs to tell him to when he stops, especially when sleeping. With dementia a person loses cognitive ability, and while breathing is an involuntary action, he forgets sometimes.
So, my concerns for your situation are: 1) IF your Grandfather refuses medication for his dementia he will decline quite rapidly, we were told this by Dad's doctors, 2) If he falls can your Grandmother pick him up, probably not. Dad fell about 8 weeks ago on the side of the house, and my over 6 foot and BIG (muscular) brother had the most difficult time picking him up under his arms. It's because when you try to pick up dead weight it is like picking up 2.5 to 3 times that amount of weight, and my Dad weighed 239 at the time. We have been told not to attempt to help him up but to call 9-1-1. 3) I realize your Grandmother wants him home, so did my Mom, but can she really do all that will be expected of her? She will need to fix his meals, possibly at some point help him to eat, clean up after him, keep the house clean, possibly change diapers at some point, give him and get him to take his meds consistently as it's extremely important he takes them regularly and on time, and be alert and proactive to possible changes in his demeanor (the dementia or threats of suicide) and his body (will she recognize the need for him to see a doctor or go to the ER if something is wrong?) What if he hits her or wanders away while she's in the bathroom? He has dementia, it IS a real possibility. And she has to still care for herself, eat right, possibly do grocery shopping, etc.
Dementia only slows down with medication, it doesn't stop, and will get worse as time goes on, these are all things to consider. It is a HUGE responsibility for anyone to take on, and I don't believe if I was a healthy 79 year old I could provide the care required.
If he stays at home make sure you get him a bracelet to wear at all times that lets everyone know he has dementia and has contact information for your mother AND another family member so so someone else is aware. Keep in close contact with your Grandmother to monitor any changes in her health, it is a fact that caregivers are under lots of stress and their health can suddenly decline. Ask the hospital what items you should have in the home that will make things easier for your Grandfather to function, such as a porta-potty, shower bench, locks they can recommend for the doors, etc.
God bless you and your family, I pray that He will guide your decisions❤
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L.B. answers from New York on July 20, 2011
Not only does my mother have Alzheimer's disease, a type of dementia, I am a nurse that works with many dementia patients. My best advise to you is see if your grandmother is willing to get some help through a homecare agency. These agencies usually focus on keeping people in the home as long as it is safe. They offer Home health aides that can assist with ADL's, nursing care, social work, and many other services. The social worker at the homecare agency can help you and your grandmother find available resources and appropriate help for your grandmother and grandfather.
Beware that sometimes acute onset of confusion in an elderly person can be caused from a urinary tract infection.
Good Luck to you
PS: you will need a dr. order for homecare agency involvement, you should beable to get that prior to your grandfather leaving the hospital.
Most insurance companies including medicare and medicaid pay for homecare services
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M.J. answers from Sacramento on July 20, 2011
I've watched two grandmas go through dementia. It's horrible and can go bad very quickly, from the forgetfulness to not being able to function. In February, my grandma could get herself to the bathroom; today, she needs a helper/lifter.
In both cases, my grandmas ended up in assisted living. The one surviving now (but in hospice care) is at a home-based provider. My parents had her at their house one week and it drove them into the ground ... they were stressed, exhausted, depressed and getting no sleep.
I'd say plan for him to be home now, but start looking at assisted living facilities in the area so you have some options in mind when he needs it (and he will). Also find out if his health plan has an elder care advisor. My parents used one with Kaiser and that person was able to point them to resources for dealing with my grandma's declining health.
So sorry you're facing this horrible condition. It's very depressing watching the decline.
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