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posted by: Anonymous
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Posted Sat, Nov 25, 2006 at 10:04:05 EST
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My mother is 69 years old and has Primary Progressive Aphasia. We started seeing more obvious symptoms 2 years ago. Since that time, it seems the illness has excellerated. In January of 2006, my mother fell down a flight of stairs and ended up landing with her back on a concrete floor as well as hitting the back of her head. She broke her L4 vertebra, but she suffered no nerve damage. The doctors did another CT scan and nothing appeared to have changed. Three months later, my mother was climbing up on something and fell again; this time hitting the back of her head on the brick hearth around the fireplace. I am wondering if the injuries to the head have maybe excellerated her illness? Is this possible?
My dad is 82 [and proud] and bears a lot of the responsibilty of taking care of mom. My sister and I go over to the house several times per week to check on them. We worry so much about them both but yet, we are not at a place financially, where we can do much more at this time.
I am suppose to be starting a new job that pays very well and also has some great perks. This job should allow me to move my parents to a house close to me [preferrably next door to me] so that I can be there for them if they need me. My dad is open to this idea so I am thankful for that because I know it is hard on him, but he won't admit it. I have offered to come over early in the morning and be with my mom so that my dad can get out and do something he likes, like fishing, but he puts it off.
My new job will also give me more flexible hours and my future bosses are very understanding. I am wondering if a move to a new home will confuse my mother worse.
We have noticed that she is not only exhibiting the difficulty in language skills, but many other things. It seems she is further along in the progression of the illness than is typical. She wants the very same thing to eat for breakfast and for lunch, every day. She gets up at 2AM to shower. She got up at 2:30 Am and went outside to get something out of the car. If my father hadn't needed to use the restroom, he would have never known. This worries me because she seems to get focused in on something and nothing can divert her attention from it. She sets and resets the clock in her house and her watch. She was always a perfectionist and it seems that when it comes to some things, she seems the same way, but with other things, she isn't at all. She is very particular about some of her hygene habits and not so much with others now.
One thing that concerns us also is this: Sometimes when she eats, she doesn't stop to think about cutting a piece of food; she just sticks the whole thing in her mouth and then sometimes gags on it. She barely chews one mouthful and she is shoveling more in.
The doctors removed her thyroid in April because the biospy showed cancer cells. The cancer turned out to be benign.
My mother doesn't speak very much at all. When we visit, we always ask her who we are and to say our entire name. We give her word search books and I sit next to her as she finds them and I ask her to say the word when she finds it. She has good days and she has some that are not so good. I ask her what she had for her meals; anything I can think of to encourage her to keep talking. She seems like she is oblivious to some things though. It's like things don't phase her at all. One things she can say very well is "I love you". She says it everytime we come and every time we go. She says it to almost everyone. I know feeling loved has always been important to her.
It has been a very hard year. We try to cope with everything emotionally. It's difficult sometimes, but we do the best we can and we do what we have to do and we just don't think about it. We try to concentrate on what we can do at this time.
She has already been to speech therapy and at one time, she was givin a computer to supposedly help her, but it was too complicated for her. My father said they were going to try a different, less complex computer, but I think they abandoned that idea.
As far as my new job, I am waiting for things the empoyer has to do before I can start. I feel I am racing against time. With the information I have given you, does this sound typical of PPA [she has already been diagnosed with PPA] only, or does it sound like there is more than just one illness working against us?
Also do you think it will confuse my mother worse if we move my parents to a different house [a better neighborhood and a one level house]? I worry about my dad as well.
Like I mentioned he is 82 and has had a quadruple bypass. He is pretty healthy but getting older and feels stiffness. We worry that if something happened to my father to where they would need to call 911, if my father couldn't tell the operator what was going on, I know my mother couldn't. We don't even know if my mother would even react. I have mentioned the alert system to my sister, but she is afraid that my mother would get too focused on that and use it when not in an emergency.
My mother seems to be okay with things that are habitual. For instance, she remembers to turn the house alarm off when letting the dog outside [or getting up and going outside at 2:30 am . . . . ], but it's hard to know what she can relate to and what she can't.
I have mentioned only some of the changes in her behavior because these are the more concerning changes; the other ones are not so important.
I'm feeling so overwhelmed right now, I need advice and help. Anything would be appreciated.
Also, my mother has suffered from seizures although not epilepsy. Her seizures were different. She would lose her sight, her hearing, and her ability to communicate. She would have a very bad headache afterward and these "seizures" as we were told they were, would just incompassitate her for a period of time. She was told that an injury to her spine as a little girl was to blame. Sometimes, it seems almost like my mom is experiencing a consitant "seizure". I only seem to see my mom [the person I have always known] when she laughs. So we try to make her laugh often.
I have one more question and I sure don't mean to sound narcissistic, but it has crossed our minds; can this illness be hereditary? We always noticed that my mom had to search for the right word, but we always thought it was just being too preoccupied and having so much on her mind. I noticed that I did it also. I noticed that my mind would jump ahead to another subject without letting my mouth catch up and I would get distracted. I have always thought this was normal and that anyone would do this, but now I start to wonder a little.
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There are 3 replies to this message.
posted by: info@speech-therapy-books.com ( Hilary Dibben ) | | Posted Sun, Nov 26, 2006 at 11:05:11 EST | I understand the incredible worry and desperation you are feeling right now. I am a speech pathologist working with adults in a rehab centre. I frequently have clients referred with Primary Progressive Aphasia (PPA). There is nothing I can do therapy-wise to improve a patient's ability to communicate, but I will see the patient 3 or 4 times with the primary caregivers to suggest strategies to improve communication. I would suggest that you contact a local support group that deals with Alzheimers or Dementia. These groups can be incredibly supportive and informative, in terms of your plans for helping your parents...what will or will not help them.
The best answer is a supported living situation, but it can be difficult somtimes to convince parents to do this...I know I am having trouble convincing my parents to move.
In terms of your questions regarding the falls your mother has had...if she suffered a minor head injury from these falls, then this would definitely exacerbate the problems she is experiencing...the damage to the brain can be cumulative. |
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Margaret Forbes | | Posted Sun, Nov 26, 2006 at 06:44:16 EST | It does sound as if your mother's illness has progressed well beyond being a disorder of language. If she is not being closely followed by a neurologist, I would recommend that you have her see one--some of the troubling symptoms you describe can sometimes be treated with at least temporary improvement. Her falls could have exacerbated her condition, but what you are observing could also be a progression of her initial condition. I agree with the previous reply that her speech/language is unlikely to improve, but an experienced speech-language pathologist might be able to help her find more successful ways to communicate. I am also very concerned about your father--caregivers of dementing individuals are under enormous stress, and your suggestion of providing relief for him is right on target, and extremely important to follow through on to help him maintain his own physical and mental health. A move closer to you where he can get help sounds like a big improvement, but it may be that at a certain point he will simply be unable to care for her at home. I am so sorry you have to go through this difficult time--I admire your efforts to help your parents at this critical time, and hope you will be able tp persuade your father to accept your help. I can understand your being concerned about your own language--you might consider seeing a neurologist and explaining your concerns.
Good luck to you. |
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Kristi | | Posted Thu, May 17, 2007 at 02:03:49 EDT | What books can you recommend that might explain things a little better? My mother continues to get worse. She seldom says anything anymore on her own.
I don't know if this has anything to do with it, but she has had some visitors lately; old friends stopping by to see her, as well as to visit my father. These people are from the church they attended and are all quite close; almost like an etended family. She seems to be doing a little better. She has said a few short sentences, but she said them on her own. I know it's not much, but we got excited that she spoke. He eyes seem a little brighter and clearer.
My mom seems to sort of bein a daze a lot of the time. She doesn't seem to express any emotion anymore. She gets fixated on things and when she does that, it's hard to get her distracted from whatever it is she is wanting to do. She gets almost obsessed with the clocks in the house; setting them and resetting them. She seems to still have a very good memory and not just long term, but short term memory as well.
But we would like to better understand why she does some of the things she does and if you could direct me to any book that would be helpful, I would greatly appreciate it.
Thank you |
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