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Re: Is anyone taking care of a spouse?

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Message 91 of 282

@g36565h wrote:

I am, he has intermittend explosive disorder with bipolar manic tendencies, Alcoholic Cirhosis of the liver, Alcoholic Hepatitus and Hepatic Eschemia, will go to doctors but not go for the MRI's etc that they need, will not take his psych meds and while he does take the meds for his liver he does not take them properly. Between trying to take care of husband, the dogs, the duplex and work I get no time for my self and I am about at my breaking point, I would file for diivorce but for,  I love him very much I do not know why he has no one else to care for him  and I do not see him being with me for christmas. I cannot help feel that I am 50 years old and life is too short for this. He is not a bad man that needs to get better he is a sick man that needs to get well. As a result of living with and trying to care for a person with mental health issues I have found a cause a dream, I want to go to Washington to speak to the powers that be in hopes to get them to put legislature in place that will put a stop to the destruction mentally ill individuals who refuse treatment bring to the llives of those who love and care for them and who are trting to care for them and protect thems from themselves. 

There are legal steps that people like me can take but is is a LONG and HARD legal road. Things must change the united states needs a new and better mental health care systems one that provides real treattment and real after care and real support for the people who a trying to care for an MI and be there support system. 


G,

You are so, so right! The care in the USA for people with mental illness is abysmal. I don't want to discourage you from advocating for change, but i do know that even congressmen with mentally ill sons have trouble getting good care. What i'm wondering is whether there is a NAMI group near you that you could attend for support. The National Alliance on Mental Illness provides free support groups as well as local advocacy. http://www.nami.org/Find-Your-Local-NAMI Has a 'find your group' feature in your state.

 

Meanwhile, you are aware that he isn't going to get better, although his quality of life can probably be improved some. But there are limits, right? So accepting, and taking care of your self, and enlarging your caregiving circle, are all SURVIVAL STRATEGIES for you, right?

 

I could be completely off base here.

 

I do want to say that i admire you. And i worry about you. And i hope there are some resources out there that support you. There should be a VILLAGE of support surrounding you, and that's what's missing in the ye olde individualistic US of A. But. There might be more resources than you are aware of?

 

Say more?

 

And a deep bow of respect to you for hanging in there, with him, and with yourself.

 

Jane

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Re: Is anyone taking care of a spouse?

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Message 92 of 282

I am, he has intermittend explosive disorder with bipolar manic tendencies, Alcoholic Cirossis of the liver, Alsoholic Haptitus and Hepatic Echmia, will go to doctors but not go for the MRI's Ect that they need, will not take his pysc meds and while he does take the meds for his liver he does not take them properly. Between trying to take care of husband, the dogs thew duplex and work I get no time for my self and I am about at my breaking point, I would file for diivorce but for,  I love him very much I do not know why he hasno one else to care for him  and I do not see him being with me for christmas. I cannot help feel that I am 50 years old and life is too short for this. He is no a bad man that needs to get better he is a sick man that needs to get well.  As a result of living with and trying to care for a person with mental health issues I have found a cause a dream, I want to go to Washington to speak to the powers that be in hopes to get them to put legislature in place thatwill put a stop to the destruction mentally ill individuals who refuse treatment bring to the llives of those who love and care for them and who are trting to care for them and protect thems from themselves. 

There are legal steps that people like me can take but is is a LONG and HARD legal road. Things must change the united states needs a new and better mental health care systems one that provides real treattment and real after care and real support for the people who a trying to care for an MI and be there support system. 

GEH
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Re: Is anyone taking care of a spouse?

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Message 93 of 282

Hi daffydoc2 I haven't been on the site in awhile so I just read your post.  The beginning stages of dementia are the hard for both of you.  Your loved one is scared because he knows something is wrong but doesn't know exactly what is wrong.  And like you said you are grieving because you know he's not himself.  I would like to suggest you enjoy this time with him.  Travel if you enjoy it, visit family, friends, go to favorite resturants, whatever you have been putting off do it NOW, if you can. I say this because you never know when he will become unable to walk or swallow or whatever and you won't be able to do these things.  Yes, you may need to make adaptations, or have someone else join you to help keep him safe but that's okay.  My husband is no longer able to walk greater than 5 feet, so he hasn't been out of the house in over a year.  I miss going for rides in the car with him, or even just sitting on the deck in the evening.  He usually is in bed by 5PM at the least because he's sleepy and more comfortable in bed.  I'm a firn believer of lettng him live as he would if he could just do what he wanted to, and I know him well enough to know what he likes and wants.  Yes, this disease is hard, yes, you will grieve every little loss he has.  But be happy for what he can do everyday.  And in order to do that you need to take care of you too.  You need to get your rest, eat well and get out of the house to do things you like without him.  If you don't have or need help yet, good for you but you may also want to start exploring what services are available in your area.  Talk with your husband's doctor abd ask about services or even a dementia specialist if your doctor isn't one already.

I know this is a lot of information and I do hope it's helpful.  Thank you for offering to be a listening ear, that meand a great deal to me.  Even though our friends know there are times I don't want to burden them with my daily anxieties, frustrations and concerns.  This site is wonderful for being able to share and feel support because others know what we are truly living!  I hope things are going along smoothly for you and your husband at the moment! Hang in There!  Till later!  Take Care!

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Re: Is anyone taking care of a spouse?

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Thanks for the kind words,  Here is an update.  I have moved into another bedroom to sleep.  We now have living wills, a trust, and powers of attorney.  I have (after she threw a tantrum) taken over dispensing the meds.  She seems more stable now, but still has a temper.  I am learning how to handle her better and learning how to handle things the right way.  I now realize that everything I was doing before was wrong.  I still never know whom I will wake up to.  We see a Psychiatrist tomorrow, I hope this is what we need.  I am willing to do almost anything to make things more palatable for the both of us.

 

Thank you for the support,

 

Mike

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Re: Is anyone taking care of a spouse?

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Hi, everyone.  I have ready many of your posts, and admire the courage and resilience you have all shown.  My husband was diagnosed with moderate demential (frontotemporal lobe, I believe) last year at age 61 after about 5 years of questionable behavior and apparent memory losses.  He gets lost a lot.  He is not yet at the level that many of you describe and survive.  Still, I grieve daily for the loss of the essence and soul of the man that I love, and fight my own frustration and irritability at the change in his capabilities.  I would like to join the discussion, as I have few other places to turn for support.  I recognize clearly that the trials and tribulations many of you have faced are far worse than I have yet encountered.  If I can be of any help to anyone by listening and supporting, I will gladly do so.  I fear my future is along the path that you already walk.  Thank you for being here.

 

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Re: Is anyone taking care of a spouse?

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 I am so sorry to hear about this FD and what you are dealing with.  I can relate although my husband doesn't have FD.  He has Parkinson's Disease (PD).  He recently almost died with severe pancreatitis and has since slipped into dementia.  It is horrible to see them so upset and not be able to reach them.  I hope things get easier for you.  Do you have resources?  It helps if you can get away a little.  I will be praying for you and your wife.

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Re: Is anyone taking care of a spouse?

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Wow! That is my wife. She paces the house all day , will not sit, sleeps intermittently at night. She has two manisfastation of the FTD that I just learned are a known. She sometimes hides her left arm behind her back and swings it up and down, other times she will twist that hand at the wrist like trying to remove it and make a throwin motion as if to throw it away. Her Neurologists says that is called the 'alien arm'. Her brain thinks it doesn't belong to her.
The other was a mystery for a couple years. She didn't know me, didn't like me, but she would place herself behind me and whimper. It broke my heart. I would ask her "Baby, what's wrong? What can I do for you?" but she would just whimper.
Her Neurologist said that is called "shadowing" Christy doesn't do it quite like that anymore. She doesn't know or like me, but she looks for me if I am not nearby and she is hard to manage if I am gone for a length of time. She is then excited and a little teenager giddy when I appear, but only for a moment.
Her Neurologist says she is still shadowing and I am 'her person'.  What a horrid disease is FTD. That the shrinking brain can cause common manisfestation to different personalities is mystery.

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Re: Is anyone taking care of a spouse?

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Wife has severe Frontotemporal Dementia. She can not communicate, or do anything for herself. She is aggressive and of all things that remained in her memory, is 20 years of aikido. It requires 2 people with her at all times because she doesn't comprehend this world. She is receiving attendant care at home.
I have to be with her 24/7, the attendants do all the household things that I can't and they help with anything physical as she is combative.
Typical dementia Rx just bent her over 90%, made her drool, but did not change the aggression.
We found the answer to the aggression and we since have much laughter in the house. She is still combative when touched and handled for necessity as toilet, dressing and shower, but not nearly as bad and although she does not speak, she occasionally manages to say, "sorry, sorry" as she is beating us up.
Christy always has been a proper lady and would never use coarse language but the last frequent word was "**bleep**".
It has been 5 years and I can do this if she does not get worse. If she gets worse I will still do it, but not as easily. She has been at this level for 2 years.
I looked back at the cruel things she would occasionally do that were totally out of character and realize the onset began 15 years ago.
 We laugh when she laughs, but we have no idea what it is about. We have to enter into her world and pretend to comprehend it.

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Re: Is anyone taking care of a spouse?

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Yes. My wife has Frontotemporal Dementia. She was a second degree blackbelt in AIkido and managed a skating rink. In 2011 at age 59 FTD erased her memory of all that mattered in 2012 FTD took all her cognician and made her aggressive.
She is ambulatory and active, rarely sits, rarely sleeps. I have to hand feed her by chasing her with a spoonful. She will rarely drink, cup or straw. I hand feed her watermelon and make all her foods contain a lot of water. Her daily oatmeal is a full 8oz of water. We use much rice in our meals and then add water to make it soupy. I make many soups loaded with vegetables.
I have to take her to toilet every 3 hours or sooner if I detect signs. She would hold bowel or bladder and get sick.
She resists, so it requires 2 of us to sit her down, stand her up, clean her, shower her, dress her, get her in and out of a vehicle on the rare occasions we go out.
She will never go to a facility becasue we, the family, will not allow it and she has beat up the staff in attempted PACE day care and a University geri/psych ward for attempted evaluation. The physicians of both documented and ordered 24/7 attendant by 2 people and that is our life.
She doesn't know me and she resents this 'guy' who is always in her way, but it is noted be every visitor, that I am 'her person'. We were close, buddies, the couple that every one envied. The most hearbreaking experience was, just before she stopped communicating, she looked at me from across the room
and called 'Hey guy! I knew then that I was no longer hers.
I sleep with her to monitor her apnea and do not dare touch her by accident. A little elbow bump, foot touch, and I will be up with her for hours. She whimpers often and sometimes just screams. But if I wake before she does from her 2 hours on, 2 hours off, and I get out of bed, I catch her sweeping her arm acoss the spot where I was, then patting to find me.
It is now 2016, 5 years into this, and I am just now finding out that our Congress has long legislated some wonderful programs for us. Because Christy is young and we are poor from the disease, she is on Medicaid.
Medicaid is a fantastic program, as intended by Congress, but I have had to fight the adminstration in two states for the benefits that Congress intends.
Congress wants me to care for Christy at home.
I now get attendant care for Christy 5 days per week and am fighting for the rest that Congress has legislated for her.
I get 600 hours of extra attendant care per year for me to have rest since my duty is 24/7. I am respecting our much criticized Congress.

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Re: Is anyone taking care of a spouse?

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Hi jr, I'm sorry it's taken me so long to respond. I understand your frustration with how your life has changed. I too have had to adjust to a loss of intimacy with my husband. But I hug him whenever possible, he usually walks to his chair in the morning with the aide and myself and that's when I hug him. If he doesn't walk and I lift him into his chair I hug when he's sitting. I always tell him when I hug him I Love You! I make a point of touching his arm or holding his hand if I am talking with him. And at night when I tuck him in I always tell him I love him and say good night. I miss holding his hand but I refuse to totally lose our personal contact. Just some ideas. I know it's very difficult, emotionally painful and socially isolating to care of the person you love! I hope things are going better for you! Take Care!
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