Living with Dementia...

Updated on July 20, 2011
L.P. asks from Uniontown, PA
23 answers

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?

Thank you.

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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.

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answers from Charlotte on


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answers from Houston on

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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answers from St. Louis on

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 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. 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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answers from Des Moines on

I don't have much advice for 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 the case with my grandma anyway.
Sorry...not much advice...mostly just wanted to say good luck.

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answers from Dallas on

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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answers from New York on

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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answers from Columbus on

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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answers from Sacramento on

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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answers from Los Angeles on


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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answers from Sacramento on

I just wanted to add that if you end up putting him in a different living situation he will be very confused. try to arrange his room EXACTLY like his room at home, take pictures if necessary so you can put things where they should be. this includes the clothes in his closets and drawers. also try and get the things in the bathroom as close to his at home as possible (sometimes that can be difficult if the bathrooms have different storage/styles. just do your best.) labeling things can help, ie: put a picture of a toilet on the outside of the bathroom door. your grandma is going to need help while he is living in the home. especially with the sundowning issue. alarms on doors and windows, one family i knew put a lazer beam type alarm across the doorway of bedroom so when the person exited it set off an alarm in their bedroom and they would get up and see what was going on. also contact the local and county police and see if they have a officer who handles alerts for missing dementia/mentally ill people. i cant think of what this is called. you will provide a picture and description of grandpa along with what will work to get him to go with the responders should he wander off. example: for my mom i would put offer to take her to get ice cream. good luck!

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answers from Houston on

It's your grandmothers's decision. She should have the opportunity to have him home, but the family should make sure she is doing well and isn't shouldering the hardship on her own and not being completely honest with the family on if she is coping well. Perhaps insurance will cover a home care nurse to come by and help daily. The family says they really care, so perhaps they will help pay for it.

Everyone will have to factor in if he refuses the medicine, if he becomes aggressive, if he endangers her or himself, then he would probably be better off in a home, but for now, I would at least give his wife the say.

I think a timeframe would work, such as "have him home for 2 weeks. At that time we will re-evaluate the situation."

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answers from San Antonio on

One question would be how she would handle running errands. Can she leave him alone for an hour and a half to grocery shop?

Does he wake up at night and "wander"? My Grandfather-in-law had to be tied to his bed or recliner every night because he would get up and leave the house. They had to put alarms on the doors because sometimes he would escape.

I don't think it is so much handling him during the day while she is at home...but I would worry about when she isn't available to watch him like nights and errands.

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answers from Spokane on

Unfortunately both my Grandmother's had dementia. They both entered assisted living once they started roaming at night, forgetting to eat, forgetting to bathe, leaving the house without telling their spouse and unable to do their daily routine on their own. Basically it was once it became clear they could seriously hurt themselves, wonder off or hurt someone else. It's a very sad, scary disease for those who have to sit by and watch their loved one go through it. And it's a lot of work and very difficult to care for someone going through it.
Good luck and I pray your family pulls together at a time like this and makes the decision based on what's best for both your Grandparents!

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answers from Beaumont on

No words of wisdom. Very hard time. So sorry. My Mom had dementia, it is heartbreaking.

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answers from Kansas City on

To be honest, I think you guys need an intervention with Grandma and not each other. This is so hard, on everyone. My grandmother had alzheimers and it's awful. I think that letting him go home now is probably fine, but it's not a permanent solution. Your grandmother won't be able to deal with everything as it will become increasingly more difficult and he may become physical. I would honestly suggest a place where they can live together but still have the option of nurses, aides, whatever at their service. This is the best of both worlds. I know it's hard on you to see your Grandpap like this, but maybe you'd feel better if you accompanied whoever is going to look at places to live, if you go that route. I went with my mom and aunt and it was really important to me as well. It helped me cope. Hugs! And remember that everything is that much more dramatic when you're pregnant b/c you think differently. Hang in there and keep us posted!

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answers from St. Louis on

My dad insisted on keeping mom home and taking care of her. Every time the phone rang we were sure it was the police calling to tell us she killed him. She went after him with a knife several times but he managed to get away from her. She also tried a lot to take control of the car. God knows how many times she almost caused a wreck.

Pretty much she had no idea where she was or anything so would attack with whatever she could get her hands on. My dad was always hiding stuff to the point were we had the strangest things in the strangest places.

We choose to leave it up to dad. Neither of us could take that power away from him, it just seemed mean. In the end she died without taking him with her. Luck if you ask me.

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answers from Dallas on

No advice, but I wanted to let you know how sorry I am that you & your family are going through this. My mother is dealing with this with HER elderly mother. They live far away, so I don't deal with it day-to-day, and don't feel I have any right to offer advice to my mom.

I know how difficult this can me emotionally. My thoughts are with you.

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answers from Oklahoma City on

There are many many stages to dementia.

In the early stages the person can live at home and do so safely if the family takes precautions. Such as taking cigarettes out of the room and locking them up when oxygen is in use anywhere in the house. Putting a fence around the property once the person starts to wander and get lost. Having a home health agency participate in the care of the diagnosed person. They can offer respite care, bathing assistance, medication care, medical liaison so that the patient can follow through with doctors orders without having to go to the office every time, they can also help with minor/light housekeeping so the full time caregiver can have that help too. I have worked in home health and know these programs can be lifesavers for the caregiver.

The patients wife will need support and love, and respite care. She deserves to have some time to herself to go take a nap, a bubble bath, buy groceries, take a walk, go t the library, go to a relatives house for a visit even overnight or a couple of days, everything she might normally do.

It will fall on the family members to help with all that when the home health agency has done their part. She is in for a hard road but she HAS been living with him all this time and is well aware of what is going on. She has been dealing with it for some time already. He didn't just get this over night. If she has been able to take care of him in a reasonably fair manner than with some assistance she can continue until his health needs are so bad that he needs constant medical care.

My ex MIL and my Mom both passed away from dementia related illnesses. My ex's mom kept finding cigarettes and lighting up when she was on oxygen. They could not be there every minute due to having some of our grand-kids to raise and they eventually put her in an Alzheimer's unit. My mom lived with my brother up to the end. She had Hospice coming in every day.

My point is that with the proper support anything is do-able. Hopefully her family will "Circle the wagons" and come to an agreement that makes everyone happy.

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answers from Redding on

Oh boy. This is such a tough situation. I went through this with my in-laws. Mom was smart as a whip and active, but tiny and fragile. Dad was healthy and strong as a horse physically, but dementia robbed him of any real ability to reason or make decisions for himself. He got very frustrated and depressed because even though he didn't understand he didn't have all his faculties, there were times when he was lucid enough to know that he couldn't remember things and people were offering to do things he should have been able to do himself. Or worse.....trying to talk him out of something he wanted to do. I have written before about him taking off in the car and getting lost. After we got the driving issue resolved, (partially because he would still bring it up), he fell and broke his hip. He had to have a hip replacement operation and then go to a skilled nursing facility for rehab to get strong enough to go home. Well, he didn't take well to that. He literally tried to escape every 5 minutes and at one point had to be restrained in his bed, which my husband threw a FIT over, but....he wouldn't stay in his bed and he kept re-injuring himself.
Anyway, the only peace my mother in law had known for a long, long time was when he was in the hospital or the facility. She confided in me that she didn't want him to come home. He was her husband, she loved him, but she could not care for him. She had her mind, but her body was failing and he was the exact opposite. She was able to sleep. And really rest.
She didn't want that to end.
It hurts me to say that she didn't last long after he was released to go home.
I believe in people being cared for in their homes if at all possible. I work for an agency that provides that kind of care and supports families in that situation. You can try to have it both. The family member at home and the other spouse having the help and support they need. My mother in law didn't get that help in time, but my father in law lived in his home and was well cared for by fingerprinted and background screened/trained caregivers until he himself passed away three years later. Of course we provided the care ourselves as much as possible, but we found wonderful helpers.
Help is the key. One person can't shoulder it, especially dealing with dementia. It's too hard on the people who still have their minds to try it without help.

Contact your local Senior Resource Center. Ask for referrals from the doctor. We got a referral from a doctor for a little 86 year old man that needs help taking care of his 76 year old wife who is too afraid to leave the house and too nervous to get in a car. She needs care but he can't hoist her out the door. They need help. We're hooking them up.

I'm sorry this is getting so long. This just touches my heart on so many levels.
I wish you the best and I'll pray that things work out.

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answers from Milwaukee on

My Dad is 79 and living with Alzheimers-he is still at home living with my mom who is his primary caregiver.

I just discovered this week that when things to get to the point that my mom can not care for him either because of her state of health or his that in order for him to be placed in a nursing home two dr's have to sign a consent. I always thought because my mom has power of health that she had all the decision making rights, but apprarently not.

So essentially it's not up to anyone unilaterlly. If the dr believes he can go home and your gma is ok with that, there isn't much you can do from that perspective. What you can do however as a family determine who can take on the lead role of staying abreast of the situation. Although your gma may still have her faculties she probably could still use help with dealing with the dr and all the information they give, etc... so having someone attend the visits and take notes is great. Build your own repoire with the dr.s so they there is an advocate in the family and seek advice from them on resources for knowledge, etc.

Also-I've learned the hard way that telling an elderly person how it's going to 'go' will only make them dig in their heels. Even if you all decide he should be in a NH, you are better off getting help with that presentation to help your gma get on board, etc...coming from family that is often viewed as though people are trying to get rid of the person, etc...

The other option is looking into home health nurses-that might be a good starting option too.

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answers from New York on

My heart goes out to you. You and your family are at the top of a long and slippery slope. There are no right or wrong answers here. I do believe, though, that it is worth a try to keep him at home as long as reasonably possible for all involved. If those are your g'ma's wishes for now, I would do whatever I could as a family unit to accomodate that. Realize that this is a fluid situation, and things can and will change that may require a different course of action in the future - the family must be flexible enough to deal with the circumstances as they evolve. My mother kept my dad (Alzheimer's) home as long as physically possible, as per his wishes, but it took a terrible toll on her. She never accepted help of any kind, and things just went from bad to worse until eventually I had to put him in a facility. I think if grandma is accepting of help (as needed), having grandpa at home is reasonable, at least for now. I wish you well - this is a horrible thing for any family to have to go through. You all need each other now - it should not be something that divides you, as I'm sure you ALL have their best interests at heart. Best of luck.

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answers from Dallas on

Being a care taker of someone in this condition is VERY hard. I think it might be doable if he is not combative or abusive. I would certainly get her some relief with either professional in home care or a daycare so she can get a break. Maybe some family members can help out on a regular basis. Also sometimes it takes time for a loved one like your grandmother to process what is happening and in time she will come around to having a different living situation for him. It just takes time letting go. Sorry to hear this is happening to your family. I advise support of some kind for all of you. Does he have Alzheimers? If so, there is a great Alzheimer Association that offer alot of resources for the patient and their families. Helped me alot.
Best Regards,

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answers from Tampa on

Dementia is hard for a younger mature adult to handle in a parent... I could not even imagine how hard it will be for an elderly wife who is barely able to care for herself and home.

Unless you want a higher risk of your Father falling and breaking a bone - which is a life/death sentence for many at this stage of life, or him going out and disappearing or maybe harming your Mother - by all means - allow her to care for him alone in their home.

There is home health care options, respite care, really nice (expensive) dementia lock down units in Assisted Living Facilities and then there are Nursing homes too... MANY options, some in which Husband and Wife can stay togehter, nut not necessarily in the same room.

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