Caregiver for Husband with dementia

drakelady

I have just now joined this forum. I seem to be able to find posting by children and in laws. My concern is related to my husband. He is 79 and I am 71. Just very recently he has been diagnosed with dementia of Alzheimer's type by the doctors at the VA hospital. I had noticed changes in him but never dreamed that the situation was this drastic.

For many years I was employed as a 911 dispatcher. I worked 12 hour shifts, some months days and the other months nights. I really believe now, looking back that his condition may have been going on longer than what I care to admit. His short-term memory has suffered. He can recall events that took place years ago with great clarity.

Now he misplaces/loses items quite often. Cell 'phone, keys, etc. So far, I have always been able to locate these items. He puts things back in their proper place but in the wrong way, if you know what I mean. The spoons, knives and forks will be in the correct drawer but not always in the correct slots. Also, he insists on 'doing' the dishes for me. Most of the time, well almost all of the time, I must wash them over.

I am happy that he wants to help, but...Now during some days of the week, I am not home, but at the real estate office where I work. He will prepare his own lunch, but will leave food stuffs out on the counter and when I come home, there they are and I have to throw them out. Now I wonder how many things has he left out and put away just prior to my homecoming...

How do others 'handle' this type of situation, when the person is your spouse? any advice? I am aware that this situation will probably only deteriorate as time passes.

Oh, last December he had an accident and totaled our minivan. Luckily no one was seriously injured. He has failed two state required driver's tests and the state wants him to surrender his license. However, he is at this time, insisting that he can and will continue to drive. We live in a very rural area and it is a 20 mile round trip to stores and such. At this time I do drive him to the VA hospital.

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agnespuffin

You are on the verge of having to make some decisions that he will not like. In fact, he may have to get a little worse before you can.

Needless to say, he MUST stop driving. Perhaps if you put it to him that since the State wants him to stop driving, if he were to injure or kill someone, the family of the injured would probably sue for immense amounts of money. Pretend that you are really worried that you would lose everything. That might get through to him rather than just saying that he doesn't drive well enough any more.
Pretend that's "it's just temporary until we can get it straightened out with the State. and you can pass the test"

Get used to telling little white lies. Often, it's a useful tool in handling the dementia patient. (Now, we'll wait until someone signs on and says you should NEVER lie.) They have never had any experience in handling a stubborn Alzheimer patient. Sometimes you lie because otherwise the truth can upset them.

No one, especially someone that isn't thinking well, wants to give up that big symbol of independence, Driving.
First, take care of yourself and remember that you will have to take on the role of the strong one in the family. It's going to be hard.

Check back with us when ever you need to just vent. Sometimes, someone will have exactly the information you need.

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pfllh

Is VA the only medical care he has? Does he have Medicare? If so, do you have a family doctor he could go to?
I decided years ago with what I saw with patients and the care he received, my husband would not receive care at VA even being 100% disabled.
Sometimes, getting a second opinion from a civilian doctor that is not limited like doctors at VA, can be helpful to make the best decisionas as to care and treatment.
I think the suggestion of saying to wait till it gets straightened out with the state is an excellent idea. That of you standing to lose lots if he drives and has an accident is definitely true. If you know of someone who has had this happen to them, then you could tell him exactly about the lawsuit and make it a joint decision as to what to do.
If you belong to a church, some have a group that visits where that would help you during the day and give him something to look forward to. Some areas have Senior citizen groups that provide transportation and pick up the people to take them to a center for recreation or just visit.
As he apparently does not realize the problem, having a caretaker come into your home would probably be too upsetting for him.
I do hope you are able to get the answers and help you need. With all the emotions we go through dealing with this type of situation, I wish you the best.
Lynn

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sistersunnie

Little white lies aka "fibletts". The Alzheimer's Association actually told me during a workshop "you have our permission to use them". Joking but serious too.

So sorry Drakelady that you have to join the ranks but I'm part of this team also. No fun! How are you making out-its been awhile since your post and I dont check in often, got my hands full!!

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mikeandbarb

Here in Dallas channel 4 news did a report on the local VA hospitals and it seems the doctors are very lacking in taking care of the people. If your able to find a doctor outside of the VA I would do so ASAP.
I know about dementia, my grand mother had it. My dad is showing early signs BUT he also has a problem with potassium. Two years ago you would have thought that he was ready to go into a nursing home due to his state of mind. When had to go to the hospital for a different problem they ran blood work and found him to be depleted of potassium and gave him a large dose to get it back up. After he'd had the potassium I noticed a bid change in his thinking and clear headed. I went with him to his doctor and told the doctor about this and he put him on potassium.

Reason for potassium depletion is due to taking high blood pressure medicine.

Do not try just giving him over the counter potassium because to much can do damage and you do not know how much he needs if this is the case but even if it isn't from low potassium Please find a better doctor if you can.

My DH is retired from the Navy and he told me to never take him to a VA hospital.

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compumom

This is all so timely for what we're going through. I'm an only child, dad is 84 and a retired pharmacist, so he knows medication. He had a number of small accidents but when he had 2 fender benders in a week, I called a halt to his driving. The problem was that my mother (who was doing most of the driving anyway) fell and broke her right elbow. 9 weeks in a cast etc. I hired a caretaker to help and drive 5 days a week and they had the cleaning lady on the 6th day. On the Sundays they stayed home or used their taxi coupons.
We made dad promise not to drive and we put the keys away to his car so that he wouldn't make a rash decision. We got him to go to the neurologist for a full workup. He took his time and then said, nothing that should keep you from driving! I almost fell over! The caretaker drove around the neighborhood and came back and said to my mother"NO WAY!"
At that point I used similar reasoning as previously stated and brought up the case of the 86 y.o. who drove into the Santa Monica Farmer's market and killed 10 people. He was confused, not homicidal. I told Dad that all of that man's savings went to legal bills and he suffered everyday for the rest of his life living with the memory of what he had done.

We put a for sale sign on his car (he wasn't insurable on Mom's anyway) and it sold the next day. Phew, we dodged that one, but I'll probably have to deal with mom in the near future. She's safe for now but having some visual disturbances. Sigh...

Oh Yes, the VA??? He's a disabled vet and INSISTS on going there to get his meds for free or at a very discounted rate. Mom hates it. They misdiagnosed his echocardiagram about 10 years ago and he had an mitrovalve hanging by a thread. I got him to see our friend the cardiologist who immediately hospitalized him and scheduled for a valve replacement. Sometimes free medical care is just too costly! He now has private docs and uses the VA ones for coumadin blood work and the check-up to get his meds.

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gneegirl

This is good info for me too - see my post on Placement for both parents. Thanks for posting. Although it's been on my mind for a year or so, I'm now forced to do something immediately since my Dad has major dimentia and my step-mom JUST had a stroke. Logisticallly it's horrible since I am, and my step-brother are on opposite sides of the country, and they are in Michigan.

I'll check back for more info. My best to you in your situation - this is so difficult, especially in your case, having to deal with a spouse. Sending Big Hugs!!

gng

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Jonesy

My husband had Alzheimer's and we were fortunate that he was ok to stay alone in the mornings, but never after 3 PM, he had sundowners. I took care of him for 4 years but started having health problems so I put him in a care home. I was very lucky regarding driving. He had two wrecks and the last one serious, but no one was injured. I told him if he continued to drive he could hurt someone and we could lose our life's savings. After a few days he told me he would give up his license. Then I faced the question of his almost new pick up which he really hated to part with. He wanted to keep it, so we did until I got the next bill for insurance, he decided to sell it instead of paying for insurance. when your husband decides to stop driving, be sure he gets converts his license to an ID card. Lots of medical facilities require a photo ID> Good luck to you.

By the way, a friend advised me not to tell anyone that my husband had Alzheimer's because it would cause trouble later and she was right. When he had to go to the hospital, I told them and they put him in a senior's behavioral lock up. There they treated his Alzheimer's and didn't believe me when I said he had an infection before I got him out of there his blood count was down to 6 and he almost died.

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pfllh

Normally, older veterans have serious health problems where the medicine can be expensive. I was told if my husband came to an appointment every so many months, he could get his medicines, eye care and hearing tests and aides.
We go to these appointments and he gets these benefits. They have a list of his doctors and if any problems, they confer with them. If surgery, special needs, or hospitalization is required, he goes into a civilian hospital and is cared for by one of his regular doctors. He sees a physian's assistant at VA. If new medicines are prescribed by a regular doctor, we get them filled at a regular pharmacy. However when he goes to the VA appointment, they update his prescriptions and we then get all of them thru VA. WE can only get his pain medicine thru a regular pharmacy. To get it through VA, he would have to go to one of VA's doctors and have all kinds of tests. We'd rather pay for the medicine.
If you have VA benefits, you need to check with them as there may be a need you have that they will cover. I didn't know they would pay for a ramp so we built it ourselves when my husband had his leg amputated. We find out about new things but have to ask or go on line and check the benefits.
If on Medicare, check to see about a person approved to come to the home to assist. I believe it is only a few hours a day and for a certain length of time. I don't know about medicaid.
My husband is in the first stage of dimentia. I saw on a TV program and read in the news about a medicine being used for people with memory problems. I asked the neurologist about it. In going over my husband's tests, he approved the medicine. Aricept is not a cure all but has helped my husband. Not everyone can take the medicine. Your doctor would have to evaluate the person first.
I don't tell the hospital he has dimentia unless a problem arises. With all the medicine he's on, They usually consider that is causing his confusion. Let them think that as long as some resident doesn't think he knows everything and tries to change medicines. We had that happen and I told the cardiologist I didn't want that idiot in my husband's room nor access to his records. Never saw him again. He had prescribed my husband to be taken off his seizure medicine as the resident didn't like that medicine. First of all some medicines you have to be weened off not just stop.
Sorry this was so long but perhaps some of the information will help some of you. You have to learn to assert yourself and sometimes be a real witch to care for your loved one and make certain others do what is right.
Lynn

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Jonesy

The pharmacist told me all of the meds for Alzheimer's are experimental, none have been proved to help. My husband had multiple ulcers and his blood count was down to 6 before the doctors would believe it was caused by the Exelon. Even in the care home they insisted on him trying it again.....he had nose bleeds two days in a row, they never listen to the family.

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mommabear1246

Hi, my husband informed me that I should do a search engine simple search for "Dealing with husbands dementia" as he did it for me this morning. My father has been diagnosed with a SEVERE case of Dimentia, we don't know yet if they will label it with an Alzheimers tag. His behaviors are very much the same as the first lady in the string that we are replying to. He drives perfectly, obeying traffic lights, stop signs, etc, never getting close to the curb or swerving into traffic. He also knows where he is going, can take us to Kmart or the grocery store, drive to church, mother is sure that he could drive back to the old farmhouses that we used to live all of his life. Of course, mother is with him always when he is in the car, and thus far we have never seen signs that he doesn't know what he is doing. On with the show...

Dad has a soft side and a mean side, with major anger issues. I have personally witnessed many many times in the past where he has hurt her physically, slapping her, knocking her across the head with his fist, poking her with his cane... ARGH!!!! and none of us kids can do anything about it because she doesn't want for us to confront him and "cause trouble"... He constantly bashes her mentally, verbally, controls every move that she makes, (trust me, I've been begging her for years to leave him while he was still at least had his mind with him but the threat was always there that he would kill her if she left him)... of course, she is the Christian woman that her mother raised her to be, and believes that SHE is the one who must care for him, and carry this burden alone. Her 4 adult children disagree, and are bringing her around to see our point of view slowly but surely (lord willing)... She does almost everything, offers to help bring in wood for the stove, shovel, etc.. he is 80 next month and she is 73 in April. She has all of her functions (besides having lost her right breast to cancer 6 years ago). Both have Hypertension, and both have diabetes type B. Oral meds.

Dad's current condition. Yesterday, mother was to go to quilting circle at her church, a regular Wednesday morning meeting... He knew she was going to go, he is ok at the house himself, he does set a few things down and forget where they are, but it's mainly that he wants mother to run around after him (or so we think).. I guess he's trying to keep her out of trouble.. haha. In the morning, he was very agitated, and she offered not to go, when this happens, he starts yelling at her and telling her that she HAS to leave and go, and that he doesn't want her here, and doesn't want to talk to her, and that he is going to be gone.. "I'm LEAVING" and then will say something to the affect of and I'm just going to be GONE, meaning he is contemplating removing himself permanently from life. We the children have been telling mother that she is much faster than him, and if she would just stay a few feet away from him rather than trying to get close to him to calm him after he has said these things, that maybe she could try going in another room that he can still see her in, she would be THERE but not really THERE on top of him. I begged her 4 times to get back away from him and help me in the kitchen, but she said she saw in his eyes that he was contemplating something bad so she kept going back to him and apologizing for everything she did and everything under the sun to try to calm him down. Instead, he just becomes MORE agitated, and then he becomes aggressive. He said he was going to kill her, and himself, and then goes to stand and leave the room, but she tried to block him leaving, and he Shoved her out of the way. I was close by and saw everything, and since he got up aggressively, I anticipated that he was going for the gun. I called 911, but he heard me, and came out into the other room where I was calling from, and said I was next. Then he went outside, like he always does, and was messing around in the garage when the police came. 5 cars, 5 cops, all very nice, I told them to act friendly, and like there was not any problem, and see what happened, but know that he has always put down women, and he is buddies with all guys. (the brothers have it good....) The police came in, said he was talking, nicely, and not agitated, but that they couldn't understand anything he was saying. He speaks his own language. Like babies before they learn to talk, I had twins, who spoke their own language to each other but nobody could understand them. I'm home from Colorado for this exact reason. I've been staying in their guest room 2 doors down from them for almost every night and day for the past little over a month. My younger brother who is a tremendous help to them, and lives only a few minutes from town is available for her to call, and can get to her within less than 30 minutes if called in a panic. I did not feel it right for me to return home until my brother returns from Atlanta and is able to assist again. He needs only come over and visit with dad for sometimes a few minutes to often times several hours. I don't feel mother is safe without someone being able to get her quickly. The police were told of the threats, and said that because there is also a weapon in the home and was used as part of the threat (though he never went to go get it in his hand) that they automatically must take the person in question to the hospital for an evaluation for a minimum of 2 days. They gave us the option of going and signing temporary committal papers so that they could get him placed in a hospital. Mother said no immediately, but the police officer said if they find that he needs to be checked out and evaluated, that the doctor and nurse would sign the papers for us, so we could agree, or agree to disagree, but he was going. The hospital worked fervently to find a place for him, but we had 6 No answers before someone accepted him 3 hours away, and 4 hours after arriving there. Every time mother and I or either one of us alone would enter the room, he would become immediately agitated, shoots daggers with his eyes, (well, she's unhappy that I just said that, so I told her I would say giving her the stink eye instead..) at least I got a laugh out of her just now.. MISSION ACCOMPLISHED :)

So far he has been most excellent to all health care providers and police, and has caused no negative issues or comments from any of them.

Today, the doctor called who is over him during this stay, and told us of the SEVERE Dimentia diagnosis. She said not even mild or moderate, but she needed to inform us of the SEVERITY of the situation. Mother freaked and started crying right away, she said "I WANT HIM HERE"... and our goal is to actually just see if they can mess with his medications a little so that he can have relief from some of his symptoms, but not be in a completely vegetative state where her work with him is even harder than it's always been. We also have discovered in talking and comparing notes, that he has been experiencing symptoms a little at a time over probably 2 to 4 years before the past 2 years, but the past 2 years have been the biggest problem. Mother retired from her job and stays home with him now.. that just brought a break through, and we figured out that he has been unhappy with her working the whole 6 years she was at her job she had problems with leaving for work because of him. Dad's mother was always kind of crazy... She had a horrible case of dementia as well, and suffered for over 10 years with it never knowing any of our names, and always thinking that she needed to pack to go "HOME" which would have been her childhood home, not the home she was in prior to living with them here. Grandma was violent enough that she could throw mother down the stairs, and she was 88. I have great patience for older people, and those suffering from mental illnesses, but I don't do well with violence, as I came from an abusive marriage before my current.

We were told today by the doctor that he would HAVE to quit driving to come home, and she asked what kind of thing does he do around the house. Since he was always a TV repair man, and a Farmer all of his life, those are the things that he knows the best, and can do without thinking about them. She said it's his long term memory working in the background, but that he is not actually capable of KNOWING full well what he is doing and being able to do it. I told her that I believe he is perfectly capable of driving a car wherever, but that driving requires dexterity and mobility and flexibility, none of which he possesses. He has bad problems with arthritis, his hands and feet swell because of diabetes, and he has no feeling in 2 of his fingers on both hands & feet because of the diabetic nerve pain as well as frost bite over the many years. When he gets a little warmer after coming inside from shoveling, his nerves shoot pain as they warm (I have it too from delivering mail for 9 years) but the pain always comes, and is constant. I always refer to it as feeling as if your hands and feet and face are being held over a raging fire 24 x 7 x 365. This is a MAJOR CONCERN. Because dad doesn't vocalize well, he does talk about a great many subjects, but nobody understands what he is saying and can follow along, or what he is talking about at all, unless they have spent all day every day with him, knowing the things that go on in his life day to day so they can follow and TRY to decipher what he is saying. If we don't agree with him, or understand him, he becomes immediately agitated and then just starts saying the same thing over and over and over again, giving hand gestures, and trying in his best way to describe what he just said, but we are STUPID and EVIL and HORRIBLE and mother was never so bad up until 3 years ago when she suddenly became this terrible person he says she is. (which she ISNT)... As I said before, he does have a good side, and many times quite a few days since I have been here in the past month, I have witnessed lots and LOTS of words of kindness maybe not directly to her all of the time, but to me, in front of her about her what a good woman she is, and a great wife, and he really has a good one (he says).. Mother's definition of abuse is much different than mine. As well as her definition of suicidal tendencies. She told the nurses in the ER that he is only suicidal maybe once every 2 weeks, but I have witnessed many comments that were talking of killing himself approximately 3 times a week every week I've been here. I told her that they cannot help him unless they know the truth, and they need to know the true answers. I told them twice a week, sometimes more.

Doc says he has to have all saws, and anything else dangerous in the house that he could get harmed with even by accident. Obviously that doesn't mean he has to live in a padded cell, but that obvious things that he shouldn't be doing anymore must be dealt with before she will allow him to come home. Mother is devastated, and is already worried about the way he will behave once he is home, but now we also have to deal with the issue of no driving and no saws and no chain saws, etc.. He will be livid. My brother won't yet be home and it will be mother and I to save ourselves. I do NOT recommend lying to your husband if you are still reading, and telling him that the State wants to take his license. Though the doctor is telling you he doesn't need to be driving anymore, have the doctor be the "Fall Guy".. they will be more than willing to break the bad news so that YOU are not the target. This doctor offered before I asked. I said we need to talk about it, and try to wrap mother's head around the idea before they start giving him restrictions. He hasn't made a fuss for them yet, but we're kind of afraid for what could happen as we know he is capable of causing a problem. We don't want him to have a heart attack in the meantime, and we want him at home to care for, as that's what our families have all done for each other (unless someone breaks a hip or something and cannot have them at home)... She slept last night from 9 to 7 am straight through, the best she has slept in years. AS you can imagine, that caused problems first thing this morning for her, she felt guilty for being able to sleep at all let alone sleep the whole night. She feels that she has FAILED her husband, and my remark to that statement is that what she is doing now by getting him the help that he needs is what "taking care of him" is all about... if she had NOT aided in getting him this care, THEN she would have failed him.

Over and out for now...

Signed, Longwinded from Iowa

Good luck everyone, please keep pouring your hearts out to everyone who will listen. Take the good advice, leave what doesn't pertain to you, and lean on others. Look for your 5 most important people and make them your prayer partners, start prayer chains, let others be aware of your feelings, take care of YOU so that you can take care of them (my hubby had a traumatic brain injury a couple years ago and was hospitalized for exactly a month losing 48 lbs in 3 weeks because he wouldn't eat or do anything for anyone) he would have been institutionalized but I cried over him and he came out of his state a couple of times. I told him what they were planning for him and he FINALLY started coming around. But only when I was broken down over his lap and for short times (but it opened the door to healing)

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maifleur01

Get your father committed before he kills someone. It probably will be your mother but it could be anyone handy. He sounds like he has become the person he has always been but he hid it from the world. Since he has been in the hospital for 3 days he can be directly admitted to a nursing home leaving your mother safe. Your mother apparently kept you from the brunt of his anger by becoming his punching bag. Perhaps it is time to help her. Forget bringing him home to care for unless you want him drugged so much that he can not move. The 'He' in he is no longer in his body.

I had to put my husband into a NH recently because I was not strong enough physically to transfer him from any position if he did not want to have his position changed. I can not imagine your mother or you trying to care for someone that will be hitting and kicking at you while you change his diapers. This journey has just begun and diapers will be a very small thing that will bring his anger.


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CA Kate z9

I agree, your father needs to be put in special care immediately. It is what's safest for him and everyone else in the family. His violence is bad for everyone, including himself. When he kills your Mom he will go to jail and then a mental institution for the criminally insane. Is that where you want him to be? Convincing your Mom to do something NOW will save everyone.

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mxyplux

One or two posts stated don’t tell em your husband/wife/whatever has AZ or Dementia because you may wind up with big problems.


That could backfire too. Three times I have found they would question my wife and not listen to me and there were then problems. That was early on and now I make damn sure they understand that they MUST talk to ME. I have phoned ahead to make that clear. I carry a typed up mssg to that effect that I can hand to em. I have included it into applications to non-primary docs like skin or foot dac etc. so there is no doubt.


So be selective/careful on that.



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sunnyca_gw

Mommabear, if you did bring your dad home I hope you searched the house from top to bottom for guns, swords, axes, knives including in the kitchen) hammers, baseball bats etc. All that needs to be locked up but if he is strong, he can do lots of damage. My GF had to put her hubby in NH & he got quite mean & kicked & hit the help so got moved a couple of times. Will you have a problem living with yourself if he does kill your mom? Think about it seriously as he just might. These patients get something in their heads & that is the 1 thing they remember, so talking of killing & suicide are what is on his mind. It will stay on his mind & his reasoning brain cells are dead so you can't get through to him. GF's hubby was put on drug to calm him down & it made him much worse so sometimes that works & sometimes it doesn't. Hope things work out for your family.

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jn91871sf

husband has dementia and sleeps all the time , when he is awake he mind comes and goes, sundowning yes. but the major problem,he does not want to eat and this past weekend we were in the ER because he was dehydrated and needed IV fluid and has UTI so antibiotics IV and oral but he"not awake or refuses to take the pills or water for hydration, very beligerant. anyone have ideas

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maifleur01

jn although you want him at home from personal experience doctors and hospitals may tell you that he can not come home even if you have professional help. Hopefully you will never have this happen but it does happen.

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maifleur01

jn I thought about this last night. Depending on how belligerent your husband is he no longer is in control of his brain so he could seriously hurt you without meaning to. Hopefully you have his POA because it sounds like he is at the state that you may have to use it if not you may need to go to court like I did to receive a guardianship. I would also suggest that you schedule a doctors visit with your husband and tell the doctor what is happening. His doctor may not be aware of the IV treatment unless your husband had a follow up. Discuss the medication and what could be discontinued after a certain point the medications for dementia are no longer effective. After your husband has seen the doctor ask the doctor to step into the hallway and ask if the doctor believes it is time for your husband to go to a home.

Just so you are aware and it may help another person you should know that if your husband does need to be in a home and you do not have the funds for it Medicaid after paperwork can provide that care. What many do not know is that there is something called the Spousal Impoverishment Standard that allows the spouse to keep some things and if there is not enough income to live on and the rest going for care. Although it is nice to leave an inheritance having none is better than having many bills that the family thinks is their responsibility to pay. https://www.medicaid.gov/medicaid/eligibility/downloads/spousal-impoverishment/ssi-and-spousal-impoverishment-standards.pdf

One thing to be aware of is that at least in this area if a person goes to a dementia facility once that person reaches a certain stage, will depend on the facility, the person is transferred to a regular nursing home. It may be possible that your husband could go to a NH rather than a dementia facility so if the doctor suggests a NH it is because your husband has progressed to where he needs more attention than a dementia facility can provide.

There are many things that you will need to think about so just ask too many people suffer in silence thinking they are the only one that has that problem or the problem is too personal.

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jn91871sf

thank you, very informative and helpful

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Jakkom Katsu

Do be aware that Memory Care facilities are extremely careful about admitting potentially violent patients. Some will take them but some facilities will refuse.

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