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07-25-2016 12:01 AM
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.
07-24-2016 11:37 PM
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.
07-24-2016 08:29 PM
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.
07-18-2016 06:36 PM
07-04-2016 12:41 PM
Reading your post though it isn't recent really struck a chord with me. The last few years have been so difficult for me as well. My husband has Parkinson's, prostate cancer, and diabetic neuropathy and now dementIa, all diagnosed since we married ten years ago. He is now in a wheelchair. We used to have a very healthy sex life. But after dealing with Depends and his poor hygiene, I have no desire. We haven't had a decent conversation in months. I'm lonely and having to learn to deal with it.
So rarely mentioned, and yet so important in an intimate relationship, is the loss of sexuality when one partner is so impaired. That is a real sad loss. I'm just wondering, is there some way in which someone else can bathe him thoroughly and there might be the chance for a little bit of play? Or is that just too much, too hard, or he's just not able to appreciate the effort? Very sad indeed. I'm sorry.
Parkinson's has its own kind of dementia. Do you have a good working relationship with his neurologist? i hope so.
do you have any help? have you hired some help? do you get a break, ever? is there either a parkinson's group or a caregiver's group nearby that you can attend?
Thank you for writing. This is an important topic and it rarely gets discussed.
06-27-2016 04:39 PM
06-13-2016 08:29 PM
I too have been away from this site for a long time too and I read your post and felt badly no one had replied before Jane. I too hope you are feeling better. I understand your feelings. I too care for my husband 24/7 and even though I am a nurse, I still abandoned by my husband. I too miss our conversations, physical contact, the little tings that were special to us. It's difficult at best but it's absolutely vital to take care of you! I'm sorry your kids are avoiding you and their Dad, have you told them how important it is to YOU to see them and talk to them? You need their support as much if not more than your husband does.
My husband has dementia and frequently speaks in his native language of Greek which I know very little, BUT I still treat him as an adult and I remind him, gently, of please and thank you. I tell him every day I love him and I ask him if he loves me, he always says yes. But I don't and won't allow him to be nice to our caregiver who comes in and not me. So even though he has dementia he knows we treat each other with love and respect, just as we always have.
You are in the early stage of caregiving it takes time to develop a routine. I would suggest you talk with your husband and set rules. If he can walk independently in therapy then he needs to do that home. No more one way in therapy and another at home. If you need a daily hug, let him know, that's important to you.
It takes time to establish your new patterns. It might be helpful to sit down and determine what do you need for you? Do you need a companion to come in a sit with your husband so you can get out? Do you need to set up a schedule for the day that includes taking your meds, eating your meals (are you not eating with your husband?), any and all the little things that make up life.
I do hope since you've written life has gotten better! I wish you the best and am sending prayers to that end!
Take Excellent Care of You! Linda
06-13-2016 08:11 PM
Things are much better, Thank You! You asked, "How do you keep going?" I don't know, all I know is I get up each day and do what I have to do and pray that my husband will have a good day and so will I. I know that this isn't forever, and even if it is I can't stop. I love him and want what's best for him. I worked in a nursing home and watched as the care deteriorated. I had him in that same home 3 years ago for 9 days and he gave up all hope after nine days. I thought he was going to die so I brought him home. But with good care, love, and an excellent dementia specialist he has done very well. His disease is taking it's toll, as is age but we are in this together and he knows that and feels safe. How can I take that away from him? Besides what else would I do with my time? All kidding aside, I can't imagine him being alive and not being with me. So we go through each day with each other and do our best to make it good! I hope all is well with you! Thank You for reading!
05-30-2016 08:58 PM
I'm amber. I really didn't think about myself as a caregiver much until recently. My husband had a stroke on Dec 23rd. He was unaccounted for for over 19 hrs after it and the Doctors said his prognosis wasn't good. I was told he'd be fed through a tube, not recognize me, not have his mind or recover his speech. They expected him to die. I was in another state and rushed to get to him. None of the expectations they gave me happened. 4 months later, he's walking, talking, thinking, and regaining his right side functions is his total focus. He's so close. But he is limited and it puts everything on me. I miss being his wife. His health is under control - from his B/P to his blood sugar, to his cholesterol. He is so much better. Our biggest problem is that he won't exercise like he's supposed to, he has right side weakness and his face has droop. He works his arm. He perks right up during therapy and acts like he can do everything. He walks on his own with me just watching. The biggest thing for me is I never see his smile anymore. I never get a hug. I seldom get thank yous. When I tease like we would do with each other, he gets his feelings hurt and cries. The last thing I ever want to do is hurt him. Since March, my kids don't even check in anymore. The line between caregiver and wife is so convoluted. I find myself crying a lot. Nothing is really wrong. I just walked through the house and realized i didn't take my medicine today. I left my breakfast on the table. i didn't eat lunch. I made dinner and it was my first meal of the day at 9pm. My bloodwork is worse than Steve's and HE HAD the stroke...sigh. Yes, I am caregiver to my spouse.
I haven't been on this site for a while, and i'm moved to respond to your post. You posted it almost a month ago. I'm so sorry he had a stroke. You are now in a totally different marriage, aren't you? and you grieve for the loss of what you once had. It is important, i think, that you allow yourself to do that, to grieve what is really gone. Terrible as it feels, since he's still there with you. but what you had is deeply different.
My hope is that he will recover even more, and regain his sense of humor so that you can tease and joke, and he'll be right there with you, laughing.
Might not happen, but one can hope.
Are there stroke survivor support groups in your area? or even simply caregiver support groups. there is all kinds of caregiving, but there are also lots of similarities between one family caregiver and another.
thank you for writing. i hope it's gotten better since you've written. that you're feeling more accepting of all of your feelings. that he's improved. that perhaps your kids are coming by again. "Better" as you define it. I hope it has gotten better.
05-30-2016 08:48 PM
What an awful day we've had! I attempted to toilet my husband by myself and we both ended up on the floor with me falling on him! Thank God neither of us got hurt! Unfortunately I think he was so scared he couldn't even rollover onto his back so I could get him up with the lift so I had to call 911. The paramedics really didn't seem to know what to do so I walked them through getting the sling behind him and then I lifted him with the lift. I am so upset. The last thing I want to do is hurt my husband, he's got enough to deal with. And I have no one to talk to other than my therapist whom I contacted. My friend showed up shortly after the paramedics and she was silent about the whole thing. That really hurt me. I know I shouldn't have tried to walk him myself, but he's been doing so well I thought that we could actually do it! But this incidence has really driven home the need for me to use the lift whenever I need to move him! I so want him to have the best life possible, but I also need to be aware of my limitations! Now I need to forgive myself and move on. Thank you reading!
You posted this about a month ago, and i am wondering how things are going now? yes i hope you can forgive yourself and move on. that's a hard thing to do isn't it? You obviously are dedicated to taking excellent care of him, and as we all do, you keep learning the hard way what your limitations are, and his. I hope the lift is being used more, to save your back as well as to keep him safe. You have a lot going on.
How do you keep going?
So glad you write here. I can tell you have a strong, positive spirit.
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