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Aphasia Hope Foundation » Aphasia » Professionals » Seeking recommendations for uncle with aphasia

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Seeking recommendations for uncle with aphasia
on: January 25, 2014, 22:41

My uncle, Tom, age 74, has expressive & receptive aphasia following a massive stroke on June 2, 2013. After recovering in hospital, he was moved to a nursing facility near his closest family (sister & 3 nieces) in Lawrence, KS, where he continued speech, occupational and some physical therapy until he had met the goals set by his therapists under Medicare rules, who felt they could go no further with him due to his difficulty communicating/following instructions. His therapies ended in approx the 3rd week of August, after which he was also moved from a private room in their skilled nursing wing to a shared room in their long-term care wing.

Around this time, the family and staff noticed a marked deterioration in his oral and auditory skills, coinciding with increased agitation and behavioral issues. I should note that in the 4-8 weeks after his stroke, he was speaking, reading & writing quite well (his doctors even noted that he was speaking better than before the stroke!), but his listening skills seemed impaired from the beginning.

In his adjustment to long-term care, in September, behavioral issues escalated to unacceptable levels for the caregivers. The family believes his deteriorating communication skills were the primary cause of his behavioral problems. His confusion, frustration, agitation, combativeness, constant talking, tantrums and conflicts with other residents and staff all created an intolerable situation.

At that point, we had no choice but to consent to placing him in a geriatric psych unit for evaluation, per Medicare/nursing facility standard procedure. He remained there for 2 weeks, while the family frantically sought a new long-term care solution.

We settled on a facility in Overland Park that accepts only brain-damaged individuals, primarily those with memory loss diagnoses. He received another round of speech and occupational therapy there, for approx 6 weeks, but again they had to discontinue it due to Medicare constraints. I should mention that he requires 24/7 care not due to severe physical disabilities or memory loss, but more due to hygiene, medication, nutrition and other daily living regimens. We are very pleased with the staff who are patient, kind, caring, and interested in improving his life. In short, they are receptive to strategies & technologies that would boost his comfort, lessen his frustration and sense of isolation, and ease/improve their communication with him. I believe that he is a unique resident to them, and that their usual strategies for memory loss residents do not necessarily apply to him.

Although he has adjusted quite well to the new facility, he has had periods of agitation and increased frustration, which the family and staff have cooperated on to minimize. We feel that we would all benefit from help & advice dealing with his aphasia. The family is concerned that, if his agitation spirals out of control or any serious incidents happen, we might have move him again, which we emphatically do not want. He has bonded with the staff, but, to our knowledge not with any other residents, primarily because of his aphasia. We know some other residents do not like him because he talks so much and makes no sense to them - they can’t communicate so they find him annoying. This causes him to withdraw further and his feelings are definitely hurt at times. Agitation escalates…

Current communication level/ability:
Today he talks a lot but very rarely gets a full sentence out, just sometimes a word between indecipherable utterances. He clearly doesn’t process what he hears – it probably sounds like mumbling. He can read, and I’ve found reading & writing to be the most effective way to communicate with him (the staff uses notes, too, and we have index cards in his room which they use for daily routine communication). He can write, not perfectly, but is extremely reluctant to do so. The staff say they can’t get him to, he just wants to talk. I’ve been able to get him to write some, but I’m afraid those skills have deteriorated, too. Still, it’s helpful when he does because he also sounds out each word as he writes.

I should also mention that I believe my uncle is somewhat autistic, though never diagnosed. He loves technology, gadgets, documenting, record-keeping, cataloging; he has always been awkward socially, and deals well only in very familiar, safe environments (self-isolation has long been a coping strategy); he was bullied as a child, though luckily protected from the worst of it; he is easily taken advantage of and has required supervision in his adult life - first by his parents, then his sister - to keep him financially secure and from making bad decisions. There is a lot of pain there, too.

Excuse my long post, but we felt it was necessary to provide a detailed picture of his situation in order to garner the best professional recommendations.

What we are hoping to learn from you:

1. Is the progression of his aphasia normal or common? I mean, going from speaking quite well for approx 2 months after the stroke to almost incoherence the next month? Could it be related to the discontinuation of speech therapy? Is it due to brain damage from his stroke? Can it be reversed? How? Honestly, his doctors/therapists/nurses have never really answered that question, which is frustrating!

2. Recommendations for a local (Lawrence/Johnson County/Kansas City) aphasia specialist who would be willing to evaluate him & his aphasia, with the aim of providing tailored recommendations for the staff & family to pursue and investigate further. I feel that a personal evaluation by an expert would, quite frankly, save the family a lot of time by directing us to effective solutions. (I’ve spent hours & days looking at software, for example, but have no idea which might work for him!).

3. We are naturally interested in appropriate software & hardware; aphasia camps, seminars, workshops for those afflicted and caregivers; aphasia day groups & facilities; local therapists and other medical professionals specializing in aphasia; online resources and strategies which staff and family can use and implement.
For example, I discovered this camp - unfortunately in Maine - which I could imagine attending with my uncle and a staff member, if only it were within driving distance from us. Or, for example, a nurse/staff member might be willing & able to attend an aphasia seminar or workshop in the future. I fully intend to keep looking for such opportunities or options.

FYI, regarding hardware & software, I have already contacted Assistive Technology for Kansans, and expect to hear back from them early next week, though I’m not sure what they might have specifically for those with aphasia. I also intend to contact the American Stroke Foundation in Shawnee, KS, early next week to see what they suggest (we had contacted them before, but spoke with a volunteer who was not particularly helpful, and then nobody called us back).

Thanking you so much in advance!

My uncle, Tom, age 74, has both receptive & expressive aphasia following a massive stroke in July 2013. Our family wants to improve his life and communication abilities by means of additional therapy, techniques, technology and other strategies, which we hope can alleviate his sense of frustration and isolation.

We are from Lawrence, KS, but my uncle currently lives in a great facility (actually a memory care unit) in Overland Park.

Maura Silverman
Posts: 65
Seeking recommendations for uncle with aphasia
on: January 27, 2014, 18:41

I appreciate your story and getting in touch w/Aphasia Hope for some input and feedback. Of course, one can not diagnosis anything from a description but there is much to gain from keeping specific notes such as yours. As a matter of fact, my first recommendation is to print this email off and also try the best you can to plot the behaviors/presentation of symptoms with the time, location, situation and any changes in medications, etc. As you note, the frustration of being unable to communicate effectively and having auditory comprehension/processing issues, can certainly be contributory to the behaviors (agitation, frustration, etc.) A good chronological picture is a must.
From there I think you want to get in touch w/ a neuropsychologist or neuropsychiatric MD who can help with the medication issues and those that relate to diagnosis of a progressive, or deterioration in skills. Because, for certain, while individuals can become less engaged with the termination of speech therapy, we generally do NOT see a deterioration to the extent that you note. There may be other physiological or medical causes that should be fully evaluated.
Meanwhile, recommendations for communication ease and access are essential and if you have determined good strategies, make sure that ALL caregivers have them. There must be an SLP at the site that could do a training for the other staff and even briefly for the other residents to make your uncle more accepted by others and others more skilled in knowing how to communicate with them. I was also going to recommend an assistive tech/aug comm center who can give you ideas…glad you have accessed that already.
I will look into some trainings and resources in your area, re: a workshop, etc. but you can also look to any local University that has a speech clinic and also at the National Aphasia Assoc’ website for support groups (they would have professionals attached to them that might be able to serve your eval. needs)
Best of luck to you and please let me know if you can think of anything else I can do for you.
Maura English Silverman,MS, CCC/SLP

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