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cherryblueskies

caregiver/daughter

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Last March my dad had a stroke at age 65. It left him paralyzed on the right side and unable to speak in full sentences. He gets caught up in what he is trying to say, like he's thinking too fast and his brain is not letting him speak. He is real repetitive. If the trash needs to be taken out, he will let you know until it's done. "TRASH! TRASH!" If the soap bottle is half empty he'll let you know every 5 seconds. He has a fixation on having bowel movements. If he doesn't go he'll tell you, "Can't go, Patti, can't go." He gets really sad. Sometimes he'll start crying. I sometimes wonder if he does this on purpose for our sympathy. He can't speak and he has definite emotional problems. He's like a child. But I wonder what really goes on in his head since he can't speak clearly. He demands and not asks. It's hard for everyone to deal with, especially my mom who is the main caregiver. My family always yells at him and tells him to shut up when he's yelling about something. I try hard not to because I can't imagine how it would feel to be stuck in a chair, unable to speak my thoughts or do the things I once was able to do. It breaks my heart. I feel helpless sometimes. I try to do everything he wants. He likes to go for rides, to get out of the house. So, I drive him around town for 15 minutes or so. I tried talking to him, but it's really hard to. We never really talked before he had his stroke so I find it easier to talk to him now, but I don't know if he understands me or not. I asked him who he loves and he said "Uhh, Patti, Andrew, uhh A- A- Adam and Andrea." Patti is his wife(my mom), I'm Andrea, Adam and Andrew are my brothers. But yet he calls everyone Patti. He doesn't call me by my name and when I ask him if he knows my name he says he doesn't. It's very strange. But anyway, my mom's to the point where she can't take any more of his yelling and child-like ways. But she often just yells at him instead of asking him to clarify himself. She gets frustrated because she can't get through to him when he repeats himself and we tell him "okay, we'll get it." Or let him know it will get done or what time he can eat. He still asks repetitively. It is hard on us all, but I'm wondering if anyone else has this sort of situation. If you do I'd like to hear how you deal with it.

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Hi Andrea,

 

I'm glad you've posted. I know you will get some good response to your concerns. I'll get the ball rolling by sharing my experiences with my husband. I believe many of his deficits are the same as your dad's.

 

My husband (Bill) had strokes 10/25/04 and 3/21/05 that have left him with extensive challenges. He has right sided hemianopsis (can't see anything right of the center of his nose), right hand and leg weakness, aphasia (difficulty expressing himself), inability to read or write, severe cognitive problems, no short-term memory. The bottom line is that he may know what he wants but he has difficulty expressing himself. He can't remember his phone number or how to use a phone. He no longer knows his address. He, too has a fixation about bowel movements - and can't remember whether he has had one or not - so he assumes he hasn't. He gets real restless, and for that reason we have a daily routine of going out to his post office box to get the mail - of course it's mostly junk mail, but it's his routine.

 

I know it's difficult to be patient with your dad - but can he help that he can't get the words out? I would take my brothers aside and have a little chat with them. How will they feel someday when they can't communicate, are frustrated and their family tells them to shut up? Whether he has handicaps or not, he's still Dad. He isn't doing any of this to be a pain. I'm just about positive that he didn't get up one day and decide to have a stroke so that he could be completely dependent upon his family.

 

And I would try to get some help for your mom, because I'm sure she's exhausted. You said he had his stroke "last March" - did you mean March 2005 or March 2006? Either way she's under alot of stress. Has he had any therapy? I'm sure that would benefit him - if nothing else, it would give her a little break. There is always hope for improvement - many here are living examples that there is life after stroke.

 

Andrea, these are just my experiences and thoughts. I've learned an awful lot during this post-stroke time. Most of all I've learned that there are many people here who will listen and share their experiences. I can't give alot of advice about how to make it all better, because this is a new way of life and we have to do alot of remembering the good times. I hope something I might have said will help you and your mom cope - it takes so much patience. I've been told so many times - 'you have to take care of yourself in order to take care of him'. It so true, and so hard to do.

 

Warmly,

 

 

 

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.

What is your dad getting for therapies? If he had his stroke in March, he surely still should be able to get speech therapy which can help both your dad and your mom learn to cope with the language difficulties you are describing.

 

My husband does the repetitive stuff, too, especially when his emotions are high and he really wants to communicate something to me. His stroke was 5/21/2000. However, with a lot of good speech therapies under our belts, I've learned how how to cope better. It takes a lot of patience and time to pull words out of a stroke survivor with severe aphasia and/or appraxia.

 

I seriously doubt that the dad's crying is on done on purpose or anything of the other things you are describing including not being able to say your name. It took my husband many months to add the word "no" to his one word vocabulary of "yes" and even longer before he could call me anything other than "Miss." It doesn't mean your dad doesn't know who you are; it only means that his brain will not let him process language enough to get the right words out. As for the emotional out bursts and crying, you need to go to your Classic Posting forum and find the two articles on stroke emotions. It's a very small forum and they are easy to find on page two.

 

A lot of the child-like behavior can (but not always) change over time and you already know that the yelling, although totally understandable on your mom and brother's parts, is not helping one little bit. He has to relearn everything regarding control of emotions, a sense of time and impulse control. Much of that is either taught as if you were teaching a small child and/or it comes back spontanously.

 

You didn't mention if your dad is on an anti-depression medications. Is he? What therapies is he still getting or not getting?

 

To answer your question in the sub-title of your post, "Does anyone else struggle with caregiving and living their own lives?" I think most of us caregivers to seriously effected survivors will tell you that the first few years we have not lives of our own. Everything revolves around trying to rehab our suvivors to their full potientual. Sad to say, but none the less true.

 

 

Jean

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Andrea,

I don't have any experience with the type of language problems you are experiencing. My husband has memory issues that cause him to ask the same questions several times, and not ever remember the answers. It is getting better tho. One thing that may help would be for your Mom to get enough breaks and support in her role as caregiver that she can muster more patience.

 

The only experience I can relate that may help is how we delt with our son who had delayed expressive language. The first thing we did was tried to stick to a basic routine for the day as well as we could and give him a lot of heads up and forewarning if things were going to change.

 

Another thought I had was - Jean talks about Don and his one word songs - I am wondering when stroke survivors get like that with one word stuck in their head... if using any kind of diversion tactic works. Changing their enviornment to something they like (turning on the TV). Giving them a snack, looking at pictures in a book, working on crafts, playing a game on the computer. Does that kind of thing work?

 

Take care Andrea.

 

-Karen

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It was March of 2005. He had therapy, speech and physical. Medicare only covered so much and my mom can't afford anymore. He was in a nursing home for 2 months to help him and to get us ready to take care of him. He will be home for a year in June 2006. It is just so crazy how you're world can be turned upside down. When I ask him questions he won't know the answer or he'll shrug his shoulders and smile, like a kid would do if he did something wrong or you caught him lying. I am only 19 and my brothers are 22 and 17.

 

 

 

The doctor prescribed Prozac for him, but my mom didn't want to give it to him. We're not big on pill-popping. I know it's supposed to help him and all, so we tried it but it didn't seem to be working. He would just be moodier, not relaxed. He still watches the same TV shows, knows the actors names, knows what time wrestling comes on (it's his favorite) and knows a lot of words. I just have to provoke him. He gets all tangled up in his words and I ask him to slow down and think about it and he keeps saying "nothing," meaning "nevermind." I try to get him to express himself a little more and take the time and think about what he's going to say so he doesn't get all jumbled when trying to speak. I seem to be the only one in the hosue to be helping him in that way. When he does have his bowel movement it's the only time he seems happy. He'll give the dogs treats and want to go for a ride. When my boyfriend comes over he always invites him to s it down next to him and watch TV. There's so much and it's hard to think of it all as I'm typing. I just have never met anyone who has had a stroke or known someone that had one. I'm glad I found this site. I went to therapy myself but at a mental clinic because I thought I was depressed, and I would tell my therapist about my situation, esp. with my mom and her ways of dealing with it and she suggested a support group. It's too bad it's taken this long for me to do something about it. Thanks .

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I am so sorry you have to go through this at such a young age. It's difficult enough when you are older.

 

Do you have any teaching colleges or universities near-by? The often have programs where students work with clients for a very cheap rate....both phyical therapy and speech. My husband and I have been going to a speech program at a college since his insurance ran out in the first year post stroke. The best $20 an hour we could ever spend.

 

My husband, when asked questions, often won't answer or he'll shrug his shoulders, too. I've learned to clarify by asking: "Do you know the answer but you just can't say it?" This technique helps us a LOT. If he says, "yes" I'll give him choices of possible answers to pick from. For him and a lot of other survivors with language issues, it's all about processing language in and language out which is entirely different from not being able to form the thoughts.

 

Jean

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Hi Andrea, and welcome!

"Quote" you asked,

"Does anyone else struggle with caregiving and living their own lives." Boy, that includes each caregiver here and in some cases, the survivor too, because they are their own caregiver. It's a very tough life to live and support a survivor no matter the ages.

 

It's hard, like it is with your mom. Patients is needed to cope with a survivor from day to day, especially with those unable to talk. My wife is in the fast lane, always in a hurry. As a result, I have learned to do many things for myself and don't ask her. Good luck to you and your mom to understand the situation with your dad. He and I are the same age.

 

I remember when she had to help me get dressed. I would have on two different soxs, shirt buttoned uneven, store tags still on my clothes as if I walked out the store without paying. I was so glad to do things on my own ability.

 

I'm a survivor, but I know the caregiver struggles they face daily. Then in the case of husband and wife, the relationships suffer in some cases.

 

 

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Hi Andrea and Welcome!!!

 

I am caregiver for my husband who had his first stroke almost 1 1/2 years ago. Several months latter he had a second. He is total care. Do I get burned out. More times yes than no.

 

The only thing my husband can do for himself is brush his teeth, feed himself and try to help lift his right arm and leg when dressing. He can only sit in his wheelchair - he cannot move it on his own and he now can only be moved from chair to bed to chair by using a hoyer lift. Since his last episode of pneumonia he can no longer use a transfer board. No one can even try to explain to me what had happened.

 

Chris' strokes have really affected many aspects of him. Mentally - he upsets very easily, worries constantly, his obsesses over things, becomes very loud and constantly talks. We get so mad with him - when your trying to watch TV he never stops talking and you can't hear the TV or when your having a conversation with someone in person or over the phone he is constantly interrupting.

 

Chris is on several psych medications to try to help him with many of his problems. For about 2 months after his first stroke it was trial and error until the doctors found the right combination. If the Prozac isn't working for your father - if I was you - I would contact his doctor and talk to him/her about what is happening. It shoulds like other medications should be tried.

 

It sounds like your mother really needs some help. Being a caregiver is a really tough job. I don't think people really understand until they try it. Would your father's insurance pay for an aide to help out for a few hours a week. Then your mother could get away and relax. My husband's doctor made me promise that I would get away for at least 2 hours a week and do what I wanted to do. Caregivers can burn out very fast and easily.

 

As for your family members, someone should talk to them. In no way should your father be told to "shut up." The family members need to sit back and think how would they react if the same happened to them.

 

I give you alot of credit for being by your father's side - especially being so young.

 

God Bless...........Take Care...........I hope things straighten out for you. Stay in touch and let us know how things are going. You will find that this is a great site and everyone is very supportive.

 

Kim

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Hi Andrea and welcome to the board!

My Mothe stroked in Jan 05 and is also aphasic, paralyzed and can be quite a handful. I'm her ONLY caregiver and an only child. Dad passed away four years ago so I'm it. I know it can be very tempting to pass our anger onto our loved ones in this situation but it is very detrimental to the stroke survivor to do so. He is not being difficult when he repeats things or can't say things, he is brain damaged in that area and it could take years to regain what he's lost or he may never regain it fully. This is something that families need to address and accept before healing can truly begin. I've had to relearn how to live my life with Mom since her stroke. She is "like" a child but what we must remember is she is NOT a child, she is still a bright, sensitive, caring woman that is just unable to express herself well and has a loose handle on her emotions.

 

Has anyone explained to you about EL (emotional lability). My Mother also had EL as a result of the stroke and would cry at the drop of a hat, she would also cry if you even touched her affected side because it sent faulty signals to her brain telling her she was in excrutiating pain even though she wasn't. The anti depressants and time have cured this for the most part and I really think your family should rethink the "pill popping" thing. Your father is DEPRESSED, wouldn't you be? If taking an anti depressant can help him (and nearly every stroke survivor and most of the caregivers I know have been on or are still on some form of these meds) then he should be given these meds. I'm not saying we shouldn't question doctors because lord knows I've fired many of them and had her taken off meds before, but only after careful research and discussion with other doctors. Sometimes it will take twenty minutes for Mom to get out what it is she wants for lunch and we as caregivers are supposed to understand this and encourage them to speak and THINK. The brain is a muscle and needs exercise like all other muscles. I know how inconvenient this can be, I've been her sole caregiver for almost a year now and I get impatient, edgy, angry, depressed etc on a regular basis but I understand she cannot help her situation so I MUST help her. Hope this helps and please try to talk to your Mother about rethinking her anti depressant stand. He really does need those meds. Also, it takes several weeks for them to work fully so if she just gave him a few pills and decided to stop you never even saw the results of what they can do. Another thing, it can take several tries to find the right medicine for your dad. Mom started off on zoloft which made her angry and mean so we talked with her doc and he switched her to Paxil, she's been pleasant and almost NO crying for 7 months now on the Paxil. Hope this post helps

Kristina

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Hi, Andrea,

I am a newbie. I am experiencing some of the same things with my dad. He has had a stroke that has affected his left side. Many of the same things you have described are the same thing we are going through. I have written more about it under My Dad has had a stroke. It is very difficult at times, but when he has a good day, we all are so thankful. He has mobility and memory problems, as well as toileting issues. My mother has finally put him in Depends at night because he was getting up and not making it to the bathroom......she was spending her nights cleaning up after him, and getting very little sleep.

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Hi, I was wondering how old your father is and how old you are. Since my dad is fixated on bowel movements, it's usually when he has one that he is in such a good mood and I also am so thankful when he has a good day. He'll ask to be put in his walker to get around better. He wants me to take him for rides, but I politely decline because of risen gas prices. It's strange because he watches the same shows, and knows what channels they're on still. Sometimes I have to sit back and remember that this is reality. This really happened. Sometimes I forget. I think that he's normal and I talk to him like that, but then I remember he's in a wheelchair and he can't move as well as he used to. It's very hard. My family isn't getting any better in the way they treat him. I can't stand it. I can't imagine what he feels.

 

Thanks...

 

Andrea

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Andrea, you hadn't mentioned if your family had rethought the anti-depressants? I really can't stress enough how much they have helped my Mom. She was absolutely unbearable to deal with until we finally got her meds right. I have attempted a couple of times to take her back off them because like your family I'm not a big proponent of medications but every time we take her off the Paxil within days she's back to crying five and six times a day over very small things so we put her back on and she goes back to being pleasant. Also, does your Mother keep track of bowel movements? He maybe happy after he has one especially if he hasn't had one in a couple days, constipation is very uncomfortable and painful and many of the meds they had mom on caused it. Thankfully since we dropped a few of her heart meds she no longer has problems with the constipation and is very regular but if this is a problem for your dad you might think about a fiber supplement or high fiber diet. Good Luck and remember, your Dad needs an advocate and it would seem that you are the only one stepping up to the plate to be that person. It's a lonely job but very rewarding when you see your loved one smile.

PS My Mom is 1yr 4 months post stroke and is just beginning to be able to call me by my name (for some reason she calls me by her sisters' names) lol You really cannot take this personally because he does KNOW your name he simply cannot get the words out to say it.

Kristina

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Dear Andrea

 

I am now the fulltime caregiver for my mum who had her stroke over 10 years' ago. She only uses one or two words and a couple of phrases, but has very good comprehension. She is also very repetitive with her one or two words, and this is certainly frustrating for the caregiver. Mum's favourite two words are Ted - my Dad's name (he passed away last year ) - and pain - which sometimes means pain, sometimes means food sometimes means hello etc etc. So communicating with Mum is very hit and miss and needs a lot of patience.

 

But don't feel bad if your Dad doesn't say your name - Mum mostly calls me Ted, and when she's frustrated or agitated calls me Sarah, which I think was the name of the first speech therapist she had after the stroke. The only time she says my name is if I sit in front of her and say it with her - she is very good at saying words by following my lip movements and speaking with me. But she does understand, and always smiles after she has said my name properly.Her speech therapist explained it to us as a problem in word selection - she can get the right category (that is she calls me a person's name even if it isn't the right one) but can't fine tune it to the correct word. It's the same if I show her pictures - if I show her a car she will often say bus or train - she knows its a form of transport but can't narrow it down to the right type.

 

Like you I am never exactly sure what my Mum is taking in and how she's processing it, but we have learnt over the years to do such a good job of communicating that I feel as if I have conversations with her all the time. Another problem she has is with purposeful speech or actions - its harder for her to say or do things when she thinks about it so the most words have ever heard from Mum since her stroke are when she is surprised or angry or has some sudden emotion, then we get some spontaneous totally normal sentences which let us know that the thoughts and words are all still in her head.

 

So do keep talking normally to your Dad, and you might try sitting opposite him and asking questions then providing different answers that he can copy and say with you. With my Mum, I can normally tell when I come up with the right answer as she often says it with me and gives a nod or taps me on the arm and says yes.

 

Am not sure how you can sort everything out with your family and help your Mum cope better - maybe a family talk with a speech therapist or other specialists might help.

 

from

Helen

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Hi Andrea, your father is going through what I believe we all do as stroke survivors, I belong to a stroke group in Canada. Some people in our Strokers group can't talk It is ver frustrating for everyone involved especially yourfather. I remember being in hospital the first time I could walk again I blubbered like an idiot. He needs his family to love him uconditionally right now . I think if you give up on him he will also. It wll get better alot of hard work. It has been 3 years post stroke for me, family& friends are most needed now.I go to gym 1hr/week, pool 2hrs/week, golf driving range 21/2 hrs/week , plus usual therapy, Thursday this week I hope to start to volunteer at my local hospital. We are all here to help any questions we are here to answer them

 

Kent

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