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Caregiver Being Abused


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42 replies to this topic

#1 TLSlark

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Posted 01 November 2003 - 12:55 PM

Hi,

I would like to know what a caregiver that's being abused by the person they are caring for can do. Here is what I live with on a daily basis, and nobody is willing to even try to help me. The only exception is the Dept of Rehab Services office here. Kevin refused all of their services, including respite, so they can't help me. We fall into the, "you're to young for our program" catagory. He's 41 and I'm 37. We were living in the UK, but had to return to the US since it would be at least 5 years before we would be able to get a council place.

I'm needing help with my husband Kevin. Below, you will find a description of his medical problems, and also his behavioral problems. I have been his sole caregiver since his stroke, with no break. I'm worn out, and can't take care of him anymore. He needs to be in a care facility, but he won't go willingly. Please note, that the negative behavior is only shown when it's just us, or if he's around his brothers and mother. They live in the UK. They can't stand to have him around because of the way he acts.

Kevin had a stroke at the age of 38, on 4 July 01. He's now blind, almost deaf, has seizures, has severe short term memory problems, gets confused very easily, severe mood swings, diabetic, and needs 24/7 care. I believe he may have vascular dementia as a result of his stroke. He's also selfish, self-centered, and cares only about himself and about getting his own way all the time. When someone says something he doesn't like, or something happens he doesn't like, he'll go off. When he does, he's physically, verbally, mentally, and emotionally abusive. He constantly makes things up, and says or yells them as if they are facts. If I try to correct him, he goes off. He knows everything, and nobody else knows anything. He won't leave me alone, unless he's asleep. He doesn't how or when to just shut up. He's constantly running people and places down. He says how great things are in Europe. He did the same thing when we were in the UK, except then it was how great things are in the US. He doesn't care that my blood pressure spikes when he starts up and won't stop. He acts like he has to be talking about something, and he doesn't care what, all the time. I can't eat a relaxed meal, and I haven't had a full night sleep since his stroke. He refuses to go into respite care or to a day center, unless I go with him. He wants only me to take care of him, but I'm about at the end of my rope. I'm also disabled. I have MS and am Bipolar. I haven't had a break since his stroke, and I don't know how much longer I can keep going before I snap. Counseling won't do any good. He can't remember what he's told, and I can't talk freely in front of him anyway. I was in counseling, but he has made it plain that he won't sit and wait on me. Neither of us have family in the area. The other night, my blood pressure reading at 9:45pm was 161/100. I had a pounding headache and my vision was badly blurred, but I'm not allowed to go to the hospital to get it taken care of. Because he hates hospitals, I can't go near one. I have to try to relax, and get my BP down that way. He finally shut up after about 2 hours of ranting that night.

unsure.gif

Tammy

#2 lhowell

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Posted 01 November 2003 - 02:09 PM

Tammy. Is there any way you can talk to his dr's Alone?? Do you live in the US now?? If so what state?? I live in NY.. Is there any way you can get a social worker that can help you find a program for him?? You with your MS and beening a care giver there Has to be help out there for you both.. Stress is Not and Will not help your MS.. Please talk to your dr. Linda57

#3 TLSlark

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Posted 01 November 2003 - 07:51 PM

I talked to his doctor, but all he did was double Kevin's Zoloft. Otherwise, he did nothing. He was supposed to arrange for a Social Worker to help me, but he never did. We live in IL. Kevin won't go anywhere unless I go with him, and am there the whole time.

Tammy
:angry:

#4 Barryb

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Posted 02 November 2003 - 09:32 PM

biggrin.gif Tammy, I an a 58yr old survivor. I understand your situation I pray to GOD that I have not treated my caregiver the way you have been treated. I'm sure Kevin does not mean to abuse you. Do what ever you need to do for yourself, he won't know and won't remember. Good luck, and God be with you.
Barry

#5 Vickie

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Posted 05 November 2003 - 12:21 AM

Tammy,
Hi, my name is Vickie and I have a father who is very much like your husband. Daddy treats my mother just terrible. And he does me, too...to some degree.

With Daddy, it is mostly the brain damage caused by the stroke and we have him on antipsychotic drugs to help him have better behavior.

Are you satisfied with the doctors? If so, you can legally have your husband declared incompetent and then have him placed into a nursing home. You will have to go thru a lawyer to do this...and your doctor will have to write a letter stating that your husband can't do for himself. We are almost at this point..just for legal reasons...such as a living will, power of attorney, etc.

IF you are NOT satisfied with the doctor..then please seek another. We use a psychiatrist, nuurologist and our family doctor. The psychiatrist is the one that controls Daddy. It seems that we change medications a couple of times a year.

Is your husband a veteran by any chance? They have programs and in-patient benefits that may help you.

Does you local hospital have a stroke center? Or any type of neurological center. Call them and tell them your situation, they may be able to help.

One thing for sure....as a caregiver...you must keep yourself healthy..and you will have to do it mostly on your own. Don't wait for an offer of help...call and ask for help yourself. You can also call your local Mental Health Center and see if they may have some suggestions. Even tho, you aren't senior citizens, call your local senior citizens center..they have tons of information and I have found them to be very helpful.

There is help out there for you..but it will be you that will have to do the searching. do you have family near..or friends that could give you a break?

If nothing else...when Daddy gets to the point of being so mean...he gets violent at times...we give him a sleeping pill that knocks him out for 5-6 hours...all under the guidelines of his physician.

Good luck...and let me know if there is anything I can do for you. We have dealt with this type of behavior for 3 years...it is terrible for sure. My Mom tends to handle Daddy with kid gloves...puts up with his hatefulness. I have a different type of relationship...and he knows I will give it back..just as he gives it to me. BUT>..he has lost the ability to reason..and for the most part...I can just wear him down..I certainly can't get him to agree with anything.

Medications have been the key for us...but it takes forever. Right now he is on Navane and Zyprexna...both are antipsychotic drugs...and he takes Celexna for depression. Over the years he has been on others...including Zoloft..but it did not work for him.

Don't give up and you might try meditating for relaxation.
Vickie

#6 bill

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Posted 05 November 2003 - 01:50 PM

Hi Tammy,
You sound like a very patient, giving person. Was you husband abusive before the stroke? As much as you love your husband, you must love yourself too.
Sometimes you have to be a bit tough, love isn't letting someone use or abuse you.
If your b/p was that high consider this, who will take care of you if you have a stroke. Sometimes we have to make decisions that are difficult or may not have an "easy" answer. You need to consider your health also, it sounds as though you need a break.
Your husband has had to deal with a lot since his stroke and will have to deal with respite care if it comes to that point. He may be angry, but may respect you more for making the decision.
I had to get a Drs. OK to admit my mom to a nursing facility. She required care 24/7 and my brother was her caregiver. He wound up becoming ill himself. Mom's gone now but my brother will carry the "scars" from his experience for the rest of his life. I loved my mother but in my set of circumstances it was the best solution.
just my 2 cents worth (2 cents don't get much anymore) wink.gif

#7 Highway227

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Posted 05 November 2003 - 10:36 PM

Tammy, Ive read all of the posts to you and I agree with them all. I have a feeling that maybe your husband is treating you bad because he has a real problem with the way he sees himself. Your husband might need meds for depression. Ive treated some of my family like he has treated you. As for getting the dept of rehab to assist you... If he is getting SSI or SSDI he will have better luck. SSDI (Social security Disability Insurance) from Social Security,
SSI comes from the state but its paid for my SSA. If he is getting either of those, then he needs to see a case worker from there and see what they can do to help you two. My first stroke was in Feb 97 (I was 43), last stroke was in Jan 2002 (I was 48)... You might want to read my webpages. Several cover Strokes (Stroke 1997 and Stroke 2002) and "SelfHelp" for Stroke Survivors. Maury

#8 TLSlark

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Posted 06 November 2003 - 07:45 PM

Social Security told me that my husband doesn't qualify for SSI. He's never worked in this country. He'd just gotten a job as a computer hardware tech and web designer when he had his stroke.

Kevin's from the UK, and to get his benefits from there, he has to live in the UK. He was in the RAF, but he's not a veteran. He wasn't in long enough.


#9 TLSlark

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Posted 26 November 2003 - 08:31 AM

I have contacted every agency in the book. Kevin refuses all services, period. I've even talked to people at the hospital. The last time Kevin was admitted, I tried to get him transferred to a rehab facility or a nursing home, but since he said that he was returning to the UK after he was released from the hospital, they said there was nothing they could do. Kevin was lying through his teeth, and I told them that, in writing. They still said they couldn't do anything, since he also said he would never agree to go anywhere I couldn't be there 24/7 to take care of him.
:angry:

Tammy

#10 Vickie

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Posted 26 November 2003 - 11:54 PM

Hi Tammy,

I am not sure about the legalese....but with my father...and his brain damage, he has refused to make anyone Power of Attorney of either his estate or health..which makes things very hard for me. Legally, doctors, nurses and hospitals don"t have to tell me a thing..or share any information WITHOUT his signature..he can no longer sign his name..or it some instances understand what it is that we need from him. For an example, when he was recently admitted into the hospital, they wanted to do an MRI...he was asked if he had metal in his head or body. He told them he had a plate of metal in his head. He does not have any metal in his body. They called me to verify...but I told them he was thinking of someone he knew who was injured in WW 11 and Daddy was fine....BUT becoz he told them that...they told me they would have to wait until another hospital faxed them an old MRI..such a waste of time, energy ....if I had been his POA over his health...they could have taken my word for it. Thank goodness, it was not life threatening. Becoz of Daddy's brain damage..his suspiciousness...he already thinks he inherited a million dollars and I have spent it all....I supposedly forged his name to a lot of his checks....Wow...what I could have done with that Million Dollars!!!!

I consulted an attorney and with a letter from Daddy's doctor, we could go to court and have Daddy declared incompetent to handle his affairs...and either my Mom or I...or both would be appointed..by the court to be Daddy's guardian. But then you have to report to the court..it is costly and of course takes time away from an already busy schedule. For now..we are letting it go...My mom doesn't handle the changes..and she really doesn't want to declare Daddy incompetent...altho she knows he is. And of course...the costs...$145 an hour for the lawyer..not counting court costs...it is expensive for their income.

This is something you might check into...if he isn't stable in his thoughts...as far as refusing help...and making you suffer...you might be able to get the courts and his doctors to help you.

Just a thought.

Vickie

#11 TLSlark

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Posted 28 November 2003 - 06:15 PM

Hi,

I only get $737/mo in SSDI, and Kevin gets nothing. I can't afford to go to court to be named his conservator. I'd have no way to pay for nursing home care, in home care, or anything else. We've been denied food stamps and medical cards, since we have "to much income". The federal poverty limit for a family of 2 is $1245/mo.

#12 nzeekerikiwi

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Posted 03 December 2003 - 04:42 PM

Tammy, you really need to get your husband into some sort of facility, or get someone else as a go between, you cannot carry on like this, it is bad enough that you have no support, but your health is on the line here.
I know is sounds harsh but your Husband needs a few lessons in life. 1 that he is lucky to be looked after by yourself, 2 that its NOT acceptable behaviour, :angry: I speak from experience, as my Mother was the same way, but she had her stroke 7 years ago and has mellowed alot.
Personally I dont think you could handle 6 yrs of this sort of treatment.
He needs maby some more meds, or maybe the meds he is taking are not suitable.
Think of YOURSELF here, yu are no good to anyone if you get ill......drag him to the nearest home, and leave him there, take a break before you break completely, DONT feel guilty about it, sad.gif he will most likely scream and shout profanities, but too bad, maybe he may come back a nicer person to live with.
My thoughts are with you on this one. try and be strong.
Anne wink.gif

#13 TLSlark

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Posted 04 December 2003 - 09:46 AM

I have talked to all the nursing homes in this area. None of them will take him, since he doesn't want to be placed. The only way to get him placed, is for him to become a ward of the state. They can determine that he isn't able to make his own decisions, and can have him placed against his will. He would have to go to a nursing home that takes violent patients. None of the one's in this area do.

#14 anna

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Posted 08 December 2003 - 09:33 PM

Hey, Tammy....I'm new to this, just found this site this evening...thank God! I think you need a major break, one way or another and darn fast. Now I know my opinion wasn't that helpful, but I have an observation. It does seem as tho alot of stroke survivors CAN control their behavior when they want or need to. I'm on my second round of stroke survivor caregiving (first, my father in law and now for 2 years, my mother) and this ain't fun! blink.gif Both survivors behave much better around other folks than they did/do when it's just the 2 of us. Why is it survivors take it out on caregivers? Is it because we're easy access? This type of turn it on/turn it off at will behavior makes me think that it's boring old depression and anger. But then again... I'm not a professional. Lexapro does seem to be helping mom, but I wish she would do more to help herself. Sorry I'm rambling folks, but it's been a very rough day. Tammy, my heart and prayers go out to you and I sincerely hope your situation improves soon.

#15 TLSlark

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Posted 08 December 2003 - 09:40 PM

Here is a copy of the email I sent out to the powers that be in the UK. I only hope I get a favorable reply soon.

To Whom It May Concern:

My name is Tammy Slark. My husband Kevin is a UK citizen. He was left totally disabled by a stroke on 4 July 2001, when he was 38. I'm his sole caregiver, and will be until he dies. He refuses any and all services that mean I won't be the only one to take care of him 24/7. He also wants me to be the sole target of his abuse.

All of his UK benefits were stopped in Aug, since we were forced to return to the US due to lack of housing in the UK. We were told that it would be at least 5 to 6 years before we would be able to get into a Council place. Why is it that asylum seekers are housed as soon as they arrive in the UK, but disabled UK citizens that are forced to return to the UK, since that's the only way they can get their disability benefits, are told that there's a 5 to 6 year wait for housing? The government should have done for us what they do for the asylum seekers and found us a place to live. If we'd had a place to live, Kevin would still be getting his benefits, and we wouldn't be struggling just to survive.

Right now, I'm supporting both of us on my US disability benefits. My US disability benefits are payable to me if I live in the UK. Kevin's UK disability benefits should be payable to him if he lives in the US. Because his benefits have stopped, we've lost 4123.20GBP in benefits in the last 16 weeks. We need that money just to be able to live. At today's exchange rate, we've lost $7145.16 since his benefits were stopped in August.

Sincerely yours,
Tammy Slark


#16 Vickie

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Posted 10 December 2003 - 01:43 AM

Hi Tammy,

You might ask if there is a service of lawyers in your area that will do pro bono work...I think that is how you spell it. I know our local senior citizen center has a lawyer that comes in once a month and they will do things for free.

Also, if you can't get Keving any help...have you contacted your local Congressman for help for YOU!

Check with your local Salvation Army, or Disabled Groups. Maybe they have something that can help you.

Let us know how you are doing.
Vickie

#17 Vickie

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Posted 15 December 2003 - 10:24 PM

Tammy,
How about Catholic Charities...and no you do not need to be Catholic. Another organization is Easter Seals.

Also, some churches have volunteers that will come into the home..just to give you and/or Kevin someone to talk to...or listen.

How about United Way?

Here in our town we have a service called First Call. It is a palce you call for ANYTHING...need a bed, some food....whatever...is there something like that in your area?

You might even call the local hospital and tell them of your situation and see if they have any suggestions.

Hang in there
Vickie

#18 TLSlark

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Posted 22 December 2003 - 05:50 PM

Hi Vickie,

I think I may finally get some help. I emailed the city offices, and they forwarded my email to the mayor and the police. The police officer I've been emailing back and forth all day, has been very helpful. He said something about sending an officer by to see me, and talk about Kevin.


#19 TLSlark

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Posted 23 December 2003 - 05:21 PM

The police came by. They told me that several agencies are working on getting me some help. The thing that's really making things difficult is that Kevin is under 60 and not a US citizen. The police have contacted Land of Lincoln Legal Aid, and are going to see if they can get me made Kevin's guardian free of charge. That way, I can have him placed in a care facility, or make any other arrangements I need to, and Kevin wouldn't have any say. The police have also contacted our state senator and local representative. They said that they may be able to have everything done in as little as 3 weeks. They also said that if there's any danger I'm going hurt Kevin, or that he's going to hurt me, then I'm to call the police. They have my phone number in the system with an alert status, so that if I call, help will be here within minutes.

#20 jaybee

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Posted 28 December 2003 - 12:25 PM

Tammy
I am glad to hear that you have called the police to stop the abuse.
Until you get guardianship, I would do this.
When Kevin begins to escalate, start a tape recorder, and then in a calm voice, tell him "You must stop or I will have to call the police.
With the tape running, it will capture the chaos that you are living with.
If the present behavior escalates, go through with your promise to call the police.

Apparently he is oriented enough to stop the behavior when they arrive. So when they arrive, play the tape to them in Kevin's presence. This way they will know that you are not exagerating your report of his behavior. They may not do anything the first time, but they have factual evidence of the abuse.

The next time it happens, start the tape recorder again, and do the same thing.

It may begin to dawn on Kevin that the behavior is going to get him placed in a care facility, and he may begin to modify his responses to you.
The other thing this will do is exasperate the police. That isn't our goal, but it can sometimes help to expedite the local supports that you need to bring this situation to an end. I am a caregiver too, and cannot imagine how difficult this must be. Jaybee

#21 TLSlark

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Posted 01 January 2004 - 07:49 PM

Hi Jaybee,

I was told by the police, that if Kevin becomes PHYSICALLY VIOLENT, then I'm to call the police, and they will remove him. If it's only yelling, then I'm on my own.

Tammy

#22 2ndChance

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Posted 04 January 2004 - 01:34 AM

Tammy: You are in a tough spot. As a legal matter you will either need to
(1)have him declared incompetent/ward of the state (you DO NOT need an attorney to do that) to get him into U.S. residential care as a non-U.S. citizen or
(2) return him to the U.K. with or without you where he can recieve his own benefits.

I will think good thoughts for you tonight.

2nd Chance in Phoenix.

#23 TLSlark

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Posted 07 January 2004 - 02:20 PM

I'm waiting to hear back from legal aid about Kevin. They're trying to arrange for me to be made his guardian, so that I can ship him back to the UK, and he wouldn't be able to say a word about it. I'd have to make sure that the airlines, airports, and Social Services in the UK know that Kevin can't be left alone, and about any special arrangements that need to be made for him. Of course, it might just be easier to have him sedated, and just take him back to the UK myself. I'd drop him at the Social Services office in his home town, go back to the airport, and fly back to the US.

#24 Guest_Lin_*

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Posted 07 January 2004 - 05:35 PM

Before you simply drop Kevin off in the UK please check with Social Services there. Several years ago I knew some people who wanted to return to the UK after several years absence. They believed that as UK citizens they had certain entitlements. The UK has residency requirements and they were not entitled to a thing. Kevin is obviously very vulnerable. Be sure there are structures that will help him.

#25 TLSlark

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Posted 08 January 2004 - 07:03 PM

Before you simply drop Kevin off in the UK please check with Social Services there. Several years ago I knew some people who wanted to return to the UK after several years absence. They believed that as UK citizens they had certain entitlements. The UK has residency requirements and they were not entitled to a thing. Kevin is obviously very vulnerable. Be sure there are structures that will help him.



We were living in the UK, and only came back to the US since there was such a long wait for housing....5-6 YEARS. I was told by Social Services that they would step in and find care for Kevin if I was to simply walk out on him, since he can't take care of himself. He still has family in the UK, but they have made it plain that they REFUSE to take care of him. He will have no choice but to go into a care facility.




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