Aphasia Support Group

Aphasia is a loss or impairment of the ability to produce and/or comprehend language, due to brain damage. It is usually a result of damage to the language centres of the brain (like Broca's area). Damage to these language areas can be caused by a stroke, traumatic brain injury or other head injury. Aphasia may also develop slowly, as in the case of a brain tumor.

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Developmental & Learning Disorders
/ Aphasia Support Group

new to being a caregiver of mother with aphasia

deleted_user
deleted_user
I just brought my mother home from rehab to live with me and my husband. She had a stroke that left her weak on the right side and with expressive and responsive aphasia. She can tell u when she has to go to the bathroom, when she is tired or hungry. Sometimes she can communicate well and other times not. I brought her home today and she seems more confused and scared. She is also mumbling to herself but it does make sense. She seemed very happy to leave the rehab but it really has thrown her for a loop. She needs 24/7 supervision for now because of her cognitive judgement. Hopefully that will improve. It's the middle of the night and I am sitting up because she does not want to lay in bed. She would rather sleep in the recliner. Is it normal for a big move home to confuse a stroke patient and leave them unsettled. She knows my house and has stayed here before but she seems fine one minute and then looks around in a panic totally confused. We have pt/of/slp set up. I want to work with her also. Sorry its long winded but I new to all this and its a little scary having someone totally dependent on you for all their needs. I just want to do the right things. Thanks, Robin
Philo52
Philo52
hi Robin,
much of what you've stated is in many ways similar to my experience. My Mom suffered a ischemic stroke in 2009 effecting the left side of her brain. She has right side paralysis and severe aphasia. Prior to her stroke, she was very independent. Now, she receives 24/7 care in a skilled nursing facility. She can be easily angered, perhaps as a reaction to her no longer controlling her life. Her cognitive ability is perhaps 70%. Expressive ability is poor, although she knows what she wants to say. She also repeatedly incoherently mumbles. From what I understand, this is called "perseveration" and is not uncommon. Great you have pt/ot/slp set up. Don't be discouraged if she doesn't make great progress. We were told by a neurologist that pt would be a waste of time and that any progress would be in the speech area in the first 6-12 months. Another neurologist disagreed with that. I think the therapy is worthwhile. It will provide both stimulation and socialization. You might want to look at who might be a suitable alternative caregiver so you will have an opportunity to get away.
Good luck and God Bless,
Phil
(Philo52 on DS)
deleted_user
deleted_user
Thank you. It's nice to know I am not alone. Pt and ot are going well. Mom still mumbled a lot even in her sleep. Communication is a little better, she can say I have to go to the bathroom and tell me when she is tired. Trying to find help so I can go back to work. But it is so expensive I don't know how we are going to do it. It's a shame that insurance will pay for a nursing facility but won't pay for help at home. We are trying to keep her home with us as long as we can. It will be a utter shame if we have to put her in a nursing home because of financial reasons. I just understand why insurance works like that. :(
Philo52
Philo52
I hope you are able to line up some help so you can go back to work. Unfortunately medical insurance, both medicare and private, won't cover long-term care. I was fortunate as my mother had prearranged her care by becoming a resident of a community that offers a full-range living options. Even though there was never a doubt as to where she would go, it is VERY expensive. She does have some long-term care insurance which helps, but it will be depleted by the end of next year. My wife and I hope we will not be in a similar situation. We bought LTC insurance just in case. Yes, it is expensive, but I gladly pay it.

Sorry to be morose, but it's just the nature of the topic. I hope suitable options will open up for you and life will become easier.

God Bless,
Phil
deleted_user
deleted_user
That's not morose, its just the truth. Mom has been pretty good. She is communicating better. We have ventured out to the store a few times. She had an eeg yesterday and we go for results today. I put in my FMLA yesterday. Somehow we will make it work. Lots of praying and faith. Mom is just to aware and really working to think of nursing homes yet. I know the time will come but I don't feel that we are there yet. Still not eating well. Dr put her on seroquel for sleep at night and for her night confusion or delusions, think its a little of both. But know her blood pressure is dropping with it. Gonna talk to him today. And of course everyone who thought it was a good idea for me to bring her home and promised to help, has gone AWOL!! Typical. But my husband and I are doing are best. Thanks for your support. It helps. Hope your mom is doing ok. Robin
deleted_user
deleted_user
Robin, I must say that I can relate to your story with my mother. She suffered a massive stroke at the end of 2010, and it left her with expressive aphasia. Since the beginning, mom has made some progress with communicating but she has not been consistent with her speech. Her speech therapist linked us with an aphasia group that helps those with aphasia a chance for socialization. It was a good idea but became expensive. I certainly feel your pain and disappointment when you stated that those who claim that they would offer to help is nowhere to be found. I had so much bitterness toward family members who live close by but rarely come by to offer support. I had to pray about the situation because I was losing all respect for family. Now I am better because I accepted the fact that it may just be me and my oldest sister who lives 3 hrs away may be the only consistent ones to take care of my mother. I hope that you will find the peace that you need during this delicate time as a caretaker for your mom.