Frenchy, yes, yes, it is a TERRIBLE thing to lose your mind and your independence. And it is an equally terrible thing to have a loved one in that condition!
The behaviors you describe are all typical of dementia. I'm not sure how much of a consolation it is but many (most?) people with dementia go through periods of paranoia and think someone is stealing from them, and that their spouse is unfaithful.
Who is managing your husband's treatment plan? Is that person very knowledgeable about dementia? There are medications that can be tried for some of the symptoms, even though there is no cure. Has hubby been seen by a geriatric psychiatrist?
Have things worsened since that 6 hours of help was allocated? Ask for a needs review. And also start exploring the options for long-term care. Even if medications can reduce your husband's agitation and improve his state of mind and behavior, he is still a dead weight that poses physical challenges for one person taking care of him at home.
I know a woman whose husband had LBD (pretty much what your husband has) and was bedbound. She intended to care for him at home forever. She had to have back surgery and she placed him temporarily in a nursing home for respite care. When she saw that they transferred him using 2 people and a lift device she realized why her back went out, and that she could not bring him home. She visited him a couple times of day. He assumed that when she kissed him goodnight she was going down the hall to her own room. Placement was better for both of them, and actually improved their relationship.
MY husband has . Parkinson's and dementia. He also has frequent and very painful bowel movements. He recently took 2 bad falls and injured his hip and has been pretty much bed bound. Lately he has been directing very mean and hateful words toward me. He tells me I am keeping him as a prisoner, that I do not love him and wish that he was dead. He hollers "HELP ME" when there is nothing that he needs. He is agitated and resentful if I speak with anyone on the phone or if they stop by the house and I talk to them. He says that I am belittling him and making him look bad. That I am the perfect caregiver. He has visions of people stealing from him and says that nobody likes him I am wondering how long I can care for him as he is 5'10 and he is down from 195 lbs to about 115. but is dead weight to help get him standing up and to the commode or to eat. I have injured myself trying to help him as I am 5'2 and about 135 lbs. I have 6 hrs of care help from the VA but is proving to be not near the help that I need. I have a daughter here but she works full time and has helped when she can. It took 2 people to get him to a Dr. apt, yesterday as he can not walk on his own. What a terrible thing it is to lose your mind and your independence.
Bradywine, short answer = yes. All the time. They may not understand what is happening and may think it is someone else trying to hurt and confuse them, despite what we would consider to be plenty of evidence to the contrary.
Bon...This is a huge adjustment for you to realize the relationship you had is gone... you did nothing to cause it, and there is probably nothing you can do to mend it now, and nothing your husband can do to begin to understand any of what he has done due to his dementia. You will have to let others help him now, and not try to bring him home unless a real miracle occurs. He is absolutely where he needs to be and you did the right thing to get him there. Bonnie, stand fast that you can't care for him because he does not understand when you try to set limits and keep him safe, or help him, and he is still strong enough to injure you severely. Consider visiting with an eldercare attorney, social worker, and/or someone from a local agency for aging to find out what need to happen next. You will find out that many loving wives have been exactly where you are today and with help can and do go on with the next phase of their lives with their heads held high. I am hoping you find out that the finances are not going to hold things back - you are the "community spouse" and entitled to significant protections if you need Medicaid to cover his care.
Babalou, My Alzheimer's husband has been home with me for only three days, and had to be taken (in handcuffs) to the Hospital. He got aggressive with me when I asked him to get off the computer after I saw he had about five websites opened over another, and had unplugged the printer, mouse was not working etc. He got very angry when I took his arm, and grabbed my arm and twisted it and pushed my fingers back til I thought they would break. I cried, and he didn't even let go then. I called the Police and they took him to the local psych hospital. I feel so horrible and guilty about having him taken away like that. I know now that I can most likely never care for him at home again. It is breaking my heart. How can I go on and live my life? I am not even sure he will get placed anywhere. He was rejected (for behavior) by all the local Nursing Homes, even with lock down units. Hard to believe there is so little help for this disease, without piles of money. I am about as low as I have ever been. Please answer. Bonnie O.
Oh, Bonnie! How sad. You must be so torn up inside.
One of my Uncles had Alzheimers and was quite combative, until the right drug cocktail was found. He lived out his last years in a VA home, singing along with the piano and occasionally revisited the battles of the Pacific Theater with other Vets, and by that I mean that they thought they were actaully back on the Burma Road. Butbthey DID find the right combo and he WAS able to go to a NH. Take heart dear, and let us know how this goes. Godspeed!
Babalou, I wanted to write you this. Today when I was with Bill in the hospital, he turned to me and said, "We need to make a sign on a stick that says "LET'S BEAT ALZHEIMER'S". Then he cried and I cried with him and held him. So very sad how much he is suffering inside. He knows he is going to this dreadful disease. The Doctpr on his case is now looking to place him in a Gerry-psych hospital for further psychiatric treatment and help getting him on meds for the behavior. He is talking to the administrators of two that may be able to take him in the area. Then the plan is that he could go to a nursing home for rehab and possibly home. No nursing homes would even take him because he had been on one-on-one. In other words, there is no place for a combative Alzheimer's person - just out them out to pasture. Pray for us. Bonnie O.
Oh, Bonnie. This is so sad! I'm sure your apartment feels empty and different without him, but I'm so glad that he's getting help in the geri- psych placement.
Dementia is a terrible disease; it robs us of our loved ones twice over!
I visited my husband today in the hospital, and he was so confused and upset. He has elevated creatine levels and was dehydrated, so that might have contributed to his aggression. He kept crying and asking me to call his Mother( who had passed twenty years ago). When I kept telling him I couldn't get her on the phone, and that she was in a better place now and that she was with him in spirit, he just got more upset with me and kept asking over and over for me to call her. He went to the bathroom (with an aide helping) and when he came out, he grabbed a pair of scissors from the sink area, and said he wanted to go to jail. Then I went to get help, and he said "If you leave, I'll stab you 16 times". The Nurse called in a code green and Police Guards came up to get the scissors from him. II now know that it will never be safe to bring him home again, and I do not want to live without him. This apartment is foreign without him in his chair beside me. I cannot go on much longer. Please Help! Bonnie O.
vstefans, Thanks you for your caring words. My husband (of 52 years) is now in a very good Gerry-Psych Hospital and receiving excellent care. I have not visited him yet, but have talked with him on the phone. He says he loves and misses me. He needs the help he can get there. With God willing, I will bring him home soon if they get the anger issues under control for awhile. I take each day at a time, and know noting is going to be the way I thought retirement would be. at least he is still here and I can tell him how much I love him. I know there will come a day when he will no longer know me, but for now,,,,,
Bon, you clearly love your hubby. If coming home again just means more distress for him, let him stay somewhere where he can believe is is staying in order to get better instead of believing such ill things of you and losing faith in your care for him. I know it is tearing you up but the living without him part is happening, despite how badly you wish it wasn't. It sounds like you are going to have to reach inside and find strengths you did not know you had to cope with this and be there for him in any way you realistically can, while missing the way things were, with someone you could depend on. My heart and prayers are with you. This business is hard enough when it is a parent (and you HAVE a spouse who supports or at least does not sabotage!), and I think it is about double when it is a spouse and you have only you....
Bonnie, you write: If I don't get the Doctors to address the anger issues, I will not bring him home again. and I just have to bring him home again - I couldn't think of living without him.
I can understand both statements! The first is common sense. You cannot live safely with a strong adult who has uncontrolled anger issues. The second is emotion and wishful thinking. Emotion is perfectly valid in a marriage! It would be awful to be married to someone you had no emotional attachment to.
But I want to assure you that you can and will live without your dear husband living in the same house. Dementia is a terminal condition. It ends in death. And perhaps more relevant, dementia robs people of their personalities ... they leave us piece by piece even before they die. This disease is horrible.
How do we caregiving spouses survive it? I don't know! But most of us do, more or less intact. My husband died after 10 years of dementia. That was nearly 4 years ago. I assure you that you, too, have the inner strength and resources to go on without your husband physically present in your home. In part the love you shared and the memories you created before this horrible disease will sustain you.
Babalou, Sorry to say my husband came home from the Nursing Home yesterday and all was going well, until he woke up from a nap. He looked around the new apartment and asked me what did I do with all his furniture? He said I was a "crook" and sold his house while he was away, and took all the money etc. etc. I tried to calm him down and tell him it was our furniture, but in a new apartment and that he forgot because he went in the hospital the weekend we moved in. Nothing worked. He just got more and more upset, and cried uncontrollably saying that he couldn't believe I did that to him. I had to call my Daughter to come and we called the Police to help us take him to the ER. He was there overnight and was transferred to a Gerry Psych unit about an hour from here. I miss him so terribly, but they said it was best not to visit him right away. I just have to bring him home again - I couldn't think of living without him. This disease is horrible. Pray for us. Bonnie O.
Bon, I hope that the doctors can find medication that can help with your husband's agitation and anger. You might look into a specialized hospital, sometimes called a Senior Behavioral Hospital, that deals in these kinds of geriatric psychiatric issues. Please let us know how things are going!
My husband was taken to the hospital on Father's Day after sitting out in the scorching heat for over five hours. He was severely dehydrated and angry at the world, including me. The day before, we had moved to a first floor apartment, and the move did not go well. We didn't get moved in until 12:30 the next morning. I paid the price the next morning when he got angry over me telling him to lower his voice and stop cursing. He grabbed my wrists and squeezed and twisted them until I thought they would break! I had thumbprints bruises on both wrists. We took him to the ER (he refused to go in the Ambulance) for some help. He was there for about two weeks in ICU for potassium levels being at a dangerous level and other health issues. He was released to a Nursing Home for physical therapy (he could not walk without assistance due to weakness) and to address his anger issues. I know they will gloss over the anger issues, as my family doctor has in the past. I was almost knocked unconscious another time when he pushed me. Why is the abuse of caregivers so overlooked by Doctors? If I don't get the Doctors to address the anger issues, I will not bring him home again. I love my husband, but I know he could hurt me next time and I won't get up.
I took care of my aunt, who had dementia, till she went into a nursing home. I put her there. I didnt want to, but was also caring for my mother, and did so for around ten-11 years. My mother did not believe in nursing homes and was devastated when I placed her in one. I was too, but there comes a time when you are too overwhelmed and physically able to give them the care they need. While a nursing home staff cannot replace "you," you are not super human. A doctor is probably not going to advise you on this very personal decision. They prescribe medications and treat symptoms. Your loved one will not go voluntarily. You may feel guilty, but find a good nursing home. Go to them. If younwalk in and smell urine, or see all the residents grouped up at the front, or a designated place and just sitting and nothing else, LEAVE. Especially if you smell urine. There are good homes and bad and awful. If your lived one can use a computer, i dont suggest you leave any sites undeleted. But there are sites that "grade" nursing homes, and you can get an idea where to start looking, even of its in a different city. So, how do you get them in when they wont go? If they have to go to the ER OR are admitted, either way, take thw doctor aside; tell him you cant take care of him and you cannot take him home. Refuse to take them if you have to. Once they are admitted, if you cant or wont take them, they will arrange for them to go to a nursing home, when discharged. You dont take them. The hospital will have the nh pick them up. You can tell them which one. If you havent chosen one, you can have them transferred later from where they are sent. I told the doctors (truthfully), I could not lift my mother and she could still stand, but couldnt walk but a couple of steps. Its a longer story, but I wasnt qualified to continue caring for her. She wasnt bedridden and with dementia, unable to comprehend the danger of falling and that I couldnt support her weight when she needed to go potty and had already soiles herself. Dont get me wrong. If she had been bedridden, I could have kept taking care of her. We are fortunate to live in a country with places designed to care for disabled, elderly, with or without dememtia. I was overwhelmed for many uears and did all I could. I wish I had had the stamina that others have, but I did what "I" could and knew when I had gone as far as I could or would go. I also had my husband and grandkids and tried to fulfill my role with them, but they had to come second. You cannot change what is happening. Do your homework and find a good nursing home. Its time to think about keeping yourself healthy and sane. I had to force my brother to help with our mother. He first refused. Even after I explained I couldnt do it alone, he refused. I said, fine then, i will put her in a nursing home. He said, "we'll lose our land!" (selfish) I said, " I dont care; I'm not dying of early age caregiver's disease so you can have this land." he only helped for that reason. But I had nobody else. If anyone criticizes you, tell them they can do half the caregiving. But you wont be solving your problem, and they probably wont help anyway or they already would be. You have to do whats best for you now. Get your assets in order. Dont give anything away or you will be penalized. Spend any money down on him until younare downntonwhat the state says you are allowed to have. Learn your state's rules. The internet has plenty of officialmsitesntonguide you. Delete your history before you sign off or be ready to have a good excuse if he finds what you are reading up on. Youwill havento be sure he is legally qualified, then, tell his doctor you cannot take care of him anymore. You can tell his doctor now, if you think he will qualify, but it will be up to you to get him in a nursing home. He 'can' refuse to go. They cannot legally hold him there, but he has to have a way home; they shouldnt take him, or provide him a way. He should think hes doing therapy or something and its temporary. It's deceitful, but he isnt himself and you do whatever it takes to get him where he is safe and you will then be safe and regain some sanity.
I don't know how to handle the anger over little things like asking my husband to put the garbage out for the valet trash. He threw the TV remote across the room and told me he had just sat down (he didn't) and I should do it. I have been doing everything all day every day. We are also in the process of moving, and the stress of doing everything is overwhelming. My closet family member is my daughter who lives an hour away and single Mom working. No where to turn for help. The Doctors just throw more medication at him that doesn't seem to help..
Reread the first few comments on here even though they are from over a year ago - they are very good. You can't cure his dementia and it is nothing you are doing wrong. It is sad and it is hard and if he really would physically hurt you it is not wrong to look for other options in care even though his behavior and irrationality is not his fault. The reality is no one is going to be able to reason with him unless there is some authority figure he respects and even then he may agree and then not remember. The marriage you once had - between two people who could understand and care for one another - is profoundly altered, but your life is not over. Big hugs and big prayers - get the brother and kids on here with you to learn more about coping with dementia, and I'm also hoping you have good medical help, e.g. geriatric neuro or psych who is good at this!
My husband has Parkinson's & dementia. Parkinsons has been diagnosed for 13 years, dementia for 2. Parkinson's dementia has removed the man I love from my life. His comprehension, logic ability to do the simplest of tasks. He still expects to drive. I've made it clear I will never ride with him again a year ago. He says if the doctor sends a letter to the DMV and have his license is revoked he will divorce me because it will be my fault. When I try to help or fix what he does wrong he gets so angry, like he hates me. Anymore it's him telling me he's going to beat the shit out of me, throw me out or divorce me. I don't know how to take better care of him than I do, I try so hard. I feel like both our lives are over at age 69. His anger is killing me. He still thinks he does things good enough and everyone is wrong but him. They children & brothers have tried so hard to reason with him about driving. I am so lost and sad.
Patnate, there is "aid and attendance" for veterans - and some waiver programs may let you do that to some degree or other, and if not, get enough respite so you can still do some work. It is true there is not as much help as there used to be.
my husband has ADULT children who live out of state every month around the first of EVERY month asks him for money. last month his daughter asked for an amount that is more than half of our income. I told him that we could not afford to send it he insisted we could I wrote down our sources of income he doesn't drive any more I refused to go and get it I went to the bank ending up sending a money gram for 1/10th the amount. this month he took money out again for her he told me to withdraw 300 dollars I srarted to protest he says don't say anything I know what Im doing I ended up sending the money gram myself my name is on the checking account I write all of the checks and pay all of the bills but when the statements come each he checks to see if Ive charged anything on them whenever I go to the ATM OR THE STORE FOR ANYTHING HE ALWAYS ASK FOR A RECEIPT and showed him the totals. before that he kept insisting we had the money
hi patnate2000 nope not anymore... unless you are very wealthy.. we are living in my sons house ..if not for that we would be in the street. I have a job. and hubby has decieded that he needs to play to be happy.. just makes my heart break for when he is angry its me that takes all the screaming...
Remembering, unless you are super-human, I doubt that you can totally avoid being hurt sometimes by the mean remarks a loved one with dementia can make. If you figure out how, let the rest of us know!
We just started our tenth year of living with Lewy Body Dementia. Here are some things that have helped me:
I remind myself as often as necessary the true source of the comments. "It is the disease talking" has become my mantra.
I acknowledge the feelings behind the comments. "Oh Honey, I am so sorry you are feeling like you're on the bottom of my priority list today. Overall you are absolutely at the top of my list, and most days I can act that way. Today I just had so many problems and things to tend to that I'm afraid I neglected you. I am so sorry. Can I have another chance starting now?" (I would say this even if I've spent the entire day doing nothing but caring for him. I try to get into his reality and not to worry about defending the Truth.)
The hardest for me was a period of paranoia, when he'd accuse me of stealing his money, or of holding him prisoner. ("Sweetheart, it must be awful to not know where our money is going and to worry about it. Let me get you our bank statements for the last few months, and when you have questions about things I'll see if I can explain it to you." He'd study the paperwork without any comprehension at all, but at least seemed someone mollified that he was given the "facts".)
I belong to a local caregivers' support group, so I learned that other people deal with this, too. Not feeling alone helps.
I have read a great deal about the kind of dementia my husband has, and about dementia in general. Knowing what to expect helps me to not take it persoanlly.
This is a very, very tough role we play. I try not to beat myself up when I don't do it perfectly. Tomorrow I'll have another chance to get it right!
How do you not feel hurt when you husband says things that are mean? Ex: You don't understand or listen to me. I'm at the bottom of your list of priorities. If I try to discuss the issues, he gets more upset. Then of course the next day he does not remember anything at all.
The behaviors you describe are all typical of dementia. I'm not sure how much of a consolation it is but many (most?) people with dementia go through periods of paranoia and think someone is stealing from them, and that their spouse is unfaithful.
Who is managing your husband's treatment plan? Is that person very knowledgeable about dementia? There are medications that can be tried for some of the symptoms, even though there is no cure. Has hubby been seen by a geriatric psychiatrist?
Have things worsened since that 6 hours of help was allocated? Ask for a needs review. And also start exploring the options for long-term care. Even if medications can reduce your husband's agitation and improve his state of mind and behavior, he is still a dead weight that poses physical challenges for one person taking care of him at home.
I know a woman whose husband had LBD (pretty much what your husband has) and was bedbound. She intended to care for him at home forever. She had to have back surgery and she placed him temporarily in a nursing home for respite care. When she saw that they transferred him using 2 people and a lift device she realized why her back went out, and that she could not bring him home. She visited him a couple times of day. He assumed that when she kissed him goodnight she was going down the hall to her own room. Placement was better for both of them, and actually improved their relationship.
One of my Uncles had Alzheimers and was quite combative, until the right drug cocktail was found. He lived out his last years in a VA home, singing along with the piano and occasionally revisited the battles of the Pacific Theater with other Vets, and by that I mean that they thought they were actaully back on the Burma Road. Butbthey DID find the right combo and he WAS able to go to a NH. Take heart dear, and let us know how this goes. Godspeed!
Dementia is a terrible disease; it robs us of our loved ones twice over!
If I don't get the Doctors to address the anger issues, I will not bring him home again.
and
I just have to bring him home again - I couldn't think of living without him.
I can understand both statements! The first is common sense. You cannot live safely with a strong adult who has uncontrolled anger issues. The second is emotion and wishful thinking. Emotion is perfectly valid in a marriage! It would be awful to be married to someone you had no emotional attachment to.
But I want to assure you that you can and will live without your dear husband living in the same house. Dementia is a terminal condition. It ends in death. And perhaps more relevant, dementia robs people of their personalities ... they leave us piece by piece even before they die. This disease is horrible.
How do we caregiving spouses survive it? I don't know! But most of us do, more or less intact. My husband died after 10 years of dementia. That was nearly 4 years ago. I assure you that you, too, have the inner strength and resources to go on without your husband physically present in your home. In part the love you shared and the memories you created before this horrible disease will sustain you.
and showed him the totals. before that he kept insisting we had the money
We just started our tenth year of living with Lewy Body Dementia. Here are some things that have helped me:
I remind myself as often as necessary the true source of the comments. "It is the disease talking" has become my mantra.
I acknowledge the feelings behind the comments. "Oh Honey, I am so sorry you are feeling like you're on the bottom of my priority list today. Overall you are absolutely at the top of my list, and most days I can act that way. Today I just had so many problems and things to tend to that I'm afraid I neglected you. I am so sorry. Can I have another chance starting now?" (I would say this even if I've spent the entire day doing nothing but caring for him. I try to get into his reality and not to worry about defending the Truth.)
The hardest for me was a period of paranoia, when he'd accuse me of stealing his money, or of holding him prisoner. ("Sweetheart, it must be awful to not know where our money is going and to worry about it. Let me get you our bank statements for the last few months, and when you have questions about things I'll see if I can explain it to you." He'd study the paperwork without any comprehension at all, but at least seemed someone mollified that he was given the "facts".)
I belong to a local caregivers' support group, so I learned that other people deal with this, too. Not feeling alone helps.
I have read a great deal about the kind of dementia my husband has, and about dementia in general. Knowing what to expect helps me to not take it persoanlly.
This is a very, very tough role we play. I try not to beat myself up when I don't do it perfectly. Tomorrow I'll have another chance to get it right!
Ex: You don't understand or listen to me. I'm at the bottom of your list of priorities.
If I try to discuss the issues, he gets more upset. Then of course the next day he does not remember anything at all.