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My husband with Aphasia
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Replies: 4 - Pages: [1] - Last reply: 2022-02-05 09:29:59 - By: Kristine Lundgren
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Susan
(Member)

Posts: 2
Registered:
2021-04-26 23:55:27

Good afternoon,

My husband 40, got a stroke almost 4 years ago (April 2003) due to very low blood pressure. I talked to Judi more than 3 years ago and I thank to her that because of her guidance my husband can recover step by step. At first he was totally mute and cannot move his tongue at all (looked like swallowed/moved back), cannot move his jaws (until now) and his body was totally paralized. I took him to doctor, chinese curer (use herbal medicine) taking accupuncture and massage for around 2 years and has given up all now. Step by step he regained : first he cannot swallow even small liquid, and water drolled from his mouth all the time. Now he can eat without chewing, means all foods that come into his mouth is swallowed directly (with liying down). He still cannot talk at all and the only sound we can hear is when he is laughing, sneezeing, coughing, and we ask him to talk he can only say aaaaaaaaaaaaaaaaaaaa ; seems like the sound comes out from the throat and very heavy. His memory is back by steps and now is around 40-50%. Very forgetful, indeed and often act like a child. Seems like the cure likes a steps of human’s life from baby to teenager.
Now I cannot do anything for him, especially because of financial problem due to his illness. I must work very hard to support our life with an ashmatic daugher that has to go to doctor almost every week. Sometimes I feel that I cannot help him to regain his health / memory anymore. Also he often irritates me and start to abuse me. Almost every night he cannot sleep well and he will wake me up almost all the night and leave me a migraene every morning. I also become ill feel / bad mood when he disturb my sleep. This has become a terror to me and I don’t know if I can stay any longer. He’s very easily angry when I cannot fulfill what he needs from me. Often because I just don’t understand what he wants. He can’t even make a gestures and replying simple yes or no questions also become a problem fo him.

Please help to advise what am I supposed to do so we can continue our life in better way. I take too much a pity to our daughter because she has become a victim of what happen to her parent.

With our sincere regards,
Susan

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Kristine Lundgren
(Member)

Posts: 11
Registered:
2021-04-26 00:03:56

Dear Susan,
Thank you for your letter and for sharing your story with us. I can only imagine the challenges that you and your family have faced over the past 4 years. You have been very persistent in your attempt to get some much needed assistance for your husband. It is also very important for you and your daughter to be safe and healthy too. Does your husband have a primary care doctor? Has he seen a neurologist in the past year? I strongly suggest that you call your husband’s doctor with all of your concerns. Perhaps your husband’s doctor can refer you to a social worker who can tell you about the resources available to you and your daughter through your medical insurance or resources in the community (support groups, home healthcare, and respite facilities). In addition, please ask your husband’s doctor to refer you to a speech-language pathologist who can assess your husband’s swallowing, language, and cognitive skills.
Best of luck to you and your family.

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Susan
(Member)

Posts: 2
Registered:
2021-04-26 23:55:27

Dear Kristine,

Thank you very much for your care and reply to our E-mail. First my husband was hospitalized for 2 weeks. He was not paralized that time, only cannot talk due to hard tongue. After 2 weeks seems there was no improvement, I took him back home and did our own therapy. He was totally blank and paralized when leaving hospital, and he looked like a living skeleton. I was thinking that I must first took care of his body to improve the work of his nerve before it died. I worked very hard to help him moving all his body and also facing very hard time with quarel to his family. His family is not ‘educated enough’ and they said better asked him to lay down rather than forcing him to walk and move, poor him. Also they were ashamed because my husband was drolling all the time because his mouth couldn’t close. I didn’t care about the family and kept on helping him with tears dropped on my cheeks. I was positive that with early therapy he still can move his body. I’m glad I am right, he’s now can do all his need except eating and can go to some familiar places on his own. He also can do some simple activity at home like cleaning the floor, washing the dishes, clothes, shoes, making my favourite hot tea, etc. I’m glad that he’s not depending to much on other people.
He went to a neurologist for 7 months and since doctor said that medication can only work for 6 months, I stopped seeing him on the 8th month. After that we saw the speech language pathologist in the hospital and got the speech therapy, if not mistaken he got the therapy more more than 30 times. No improvement at all. We were stil going on the accupuncture and massage. Afterall, I got broke and regretfully have to stop taking care of him. I take a pity to my daughter as I didn’t really care about her. Then I focus more on her since she is 8 now and need more attention on her study, health and future. We started our life with a lot of struggle and glad that now we start to be stable.
As for social worker, I already tried to contact some sources in the case they can give my husband a possible job for his activity as I’m sorry to see him feel hopeless and jobless. I think that with activity can help to improve him slowly.
The thing that still burden me is that he cannot move his jaws at all, so he cannot chew food, cannot talk at all, and didn’t improve the memory in the past 1 year. Do you think this condition can be improved ? Sometimes I feel hopeless and want to leave him for a better future. I myself have a brain injury that caused head pain almost all the time. All the stress has lower the quality of my life, but I must force hard as I have responsibility to take care esp. my daughter.
I don’t want to say that my life is very hard even all people told me that way. I still want to continue our precious life and if possible without sacrifying anybody. Too greedy maybe, but since I started to have a family, I promised myself to make a happy family, nobody will know what happen. I hope there will be no time for me to choose either one.
I thank to all support I received mostly from my friends. Without them I am a hopeless and weak woman and may feel like at the end of the world.

Thanks also for your support to our family, it’s very meaningful.

Warmest regards,
Susan

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Kristine Lundgren
(Member)

Posts: 11
Registered:
2021-04-26 00:03:56

Dear Susan,
You certainly have made many attempts to assist your husband in his recovery. I am so glad to hear that you discuss these difficult issues with your supportive friends. In your recent email, you asked whether your husband’s condition would improve. Because I do not know your husband, I can’t respond to this question but I can tell you that many individuals who have had a stroke continue to benefit from treatment even years after the initial stroke. I recommend that you have a speech-language pathologist re-evaluate your husband’s swallowing and cognitive skills. The speech-language pathologist can discuss these issues with you after completing the testing.
Best of luck to you and your family.
I hope this helps.
Kristine

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