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KristineP
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Hello everyone. I am new to the dementia group. My father was diganosed with frontotemporal dementia in October of 2007. My family (3 brothers, 2 sisters, mother and spouses) are relieved to finally have a diagnosis for my father's disease. So far it has been a challenging process but we are all very blessed to have each other to rely on during this critical family issue. The disease so far seems to be slowly taking him away. Instead of my father losing his memory like many Alzheimer's patients, he is losing his ability to speak and verbally communicate with his family and friends. Every visit to his house is becoming more and more awkward as I am torn between trying to talk with him vs the "leave him alone and don't make him uncomfortable and confuse him" phase. He spends most of his days at home alone while my mother is out doing her thing (substitute teaching and gardening). Her days of being able to get out and go are now numbered. My point is, he spends most days at home alone, doing his own thing and not being "taxed" by having to engaged in informal but short conversations or being asked any questions. I really get the feeling he likes it this way and my mother is getting out while she can because it won't be long before she will be homebound. I was interested to know if anyone else had this issue with someone with FTD. No matter which way I go with it (talk vs. not talking) I feel very uncomfortable. Any ideas on this one? Thanks |
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MaryCanada
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Hi Kristine....I'm 63...diagnosed 2 years ago with alzheimers, then the diagnosis was changed to maybe the language presentation of FTD. Like your Dad, I sometimes have trouble getting the words out. And I find when we have family get togethers, after about an hour I cannot understand words that are being said to me. I have to go to a quiet spot for about 1/2 hour until my brain becomes less fogged up. Like your Dad, I have no problems with my memory at this point, just the confusion that builds in my head when I have too much input. The aricept and namenda have enabled me to once more enjoy an hour or so shopping at a time. Jim has learned to watch my eyes....he can see when I'm struggling with too much for my brain to handle. I hope your Dad is on the meds.....they have made the greatest improvement in my life. Post edited by: MaryCanada, at: 04/13/2008 15:30 |
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sallie
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well, I never heard of FTD. my mom must have both...memory and speaking...gets very confused, and can barely remember lots and lots of words she always knew, or peoples names. too. We need patience. and Mary Canada, I am so sorry for what you are dealing with. I am glad you have Jim. this has to scare him also. I think these diseases are probably the cruelest that there are! bless you. The greatest good you can do for another is not just to share your riches, but to reveal to him his own. Benjamin Disraeli, 1804-1881 |
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burdman
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Hi Kristine I just joined the group yesterday, so just a newbie. I was scanning over the forum for anyone that is experiencing FTD. My wife is 54 years old and was diagnosed in August of this year with FTD. She began having problems in the fall of 06. She became very withdrawn, was not interacting with employees at work and her hand writing became unreadable. We went through three neuorlogist and two diagnosis before getting what I hope is an accurate diagnosis. The first was severe depression, the second was PD. She is now much like your father. She can go an entire day without speaking to me. She does not exhibit any interest in anything that she used to, such as cooking, socializing, cleaning house etc. There has a been a big change in her personality, at one time she was very outgoing and never met a stranger. Now she would rather sit at home and watch TV, which at one time was one of her least enjoyable activities. Is your Dad experiencing balance problems, or problems with fine motor skills? We have always been very active, but that all may be at risk in the near future...Good luck with your Dad, and just take it day by day.... |
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singingangel
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It is normal for them to lose interest in past activities they did. It is like they want a place where they arent worried about not remembering things or doing embarrashing things. Burdman is right. You need to take things one day at a time. I do think it is good to take pictures of the good moments they have. That way you will have a postive memory of your loved one. Hugs Lori I have dystonia, neuropathy, gerd, arthritis, and fibromyalgia, carpal tunnel and other ailments. I enjoy embroidery,music, and reading my Bible and Christian books. I love to bake. I try to be very supportive and positive. |
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MaryCanada
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I wanted to comment on the balance problems. For three years I've been having balance problems, falling against furniture, walls, etc. For two years I've been using a walker when out of the house...or hanging onto my husband for balance. I've complained to all my doctors about the balance problems, the muscle spasms, the muscle burning for 3 years. I've had three EMGs and nerve conduction tests, was referred to the ALS (Lou Gehrig Clinic), and have been prescribed various medications, none of which helped. Fortunately I saw a resident doctor last month, who suggested support hose.......and miraculously most of my leg problems have cleared up. The muscles down the sides of my legs now work properly...and I have no balance problems. For some reason the blood was pooling in my legs and not making the return trip up to my body. Post edited by: MaryCanada, at: 11/04/2008 07:00 |
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KristineP
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I do not know if my father is having balancing problems. I see him about once every 2-3 months and therefore, I am not with him everyday to notice his symptoms. I did see him briefly yesterday and physically he looks great, but when it comes to communicating with people, he says very little now and will wave at people he knows, but the verbalization is fading away. As the disease progressing, I am sure there will be many more symptoms that are not present now. |
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MaryCanada
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Hi and welcome. I just wanted to mention that there is a great forum for caregivers of FTD patients at: http://ftdsupportforum.com You might want to check it out, if you haven't done so already. |
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singingangel
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Speech and communicating is a loss that occurs. I am sorry he is having difficulties. It is normal to wave at people. Just need to watch for difficulties in swallowing. If that happens then thicken liquids and pureed food needs to be used. I have dystonia, neuropathy, gerd, arthritis, and fibromyalgia, carpal tunnel and other ailments. I enjoy embroidery,music, and reading my Bible and Christian books. I love to bake. I try to be very supportive and positive. |
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burdman
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Hi Mary They also suspected ALS with my wife as well but EMG showed no signs of motor neuron disease. So have you been diagnosed yet? |
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"MDJunction to me has been the helping friends of understanding that I have needed. I feel now as if someone else it the world understands the things that I am going through. I feel less alone and happier. Here I can let out all my emotions and get support from many people who have been in similar situations. It really has been a life saver for me!" (Amanda78)
