Does anyone else familiar with this ? My husband was diagnosed at age 51 and is now 62.
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@hopeful33250 Doing better. I feel bad for my husband. He is frustrated when trying to talk. Says bits and pieces but I don't understand him very well. Now at meals he eats with hand while holding fork in one hand. Doesn't want help either. Not only does that stress me but this fingernails are filthy. I try to cut them. He doesn't like it. I'm washing his hands and also using a cuticle stick to clean nails. Nursing home doesn't bother. Frustrating.
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@dianajane I appreciate the update. I certainly admire all that you are doing to help your husband. I understand your frustration over the nursing home not being attentive to the details of hygiene including caring for nails, etc.
I'm sorry to hear that he is continually frustrated with speech problems. Not being able to communicate is a tremendous loss. You take it for granted until you can no longer use this skill. I don't suppose any speech therapy is available for him now?
@hopeful33250 …Thank you for your kind words. Did try speech therapy when in early stage, but to no avail. He tried so hard but the therapist thought it was too stressful for him. And he is worse as I have said. Also has what doc called essential tremor which has also gotten worse and his balance is off. Needs assistance but hates to be followed he can still walk after getting help up from chair.
My husband also tried speech therapy for a short time. I can’t say it was very helpful but at least we tried. He also can no longer use utensils and eats with his fingers . That does limit some of the food choices in the care facility. When I’m there at mealtime I take a washcloth to clean him up. I also clip his nails as it’s a process. He mumbles and tries so hard to speak at times. It breaks my heart. Peace and Gods blessings !
@dianajane and @julesa
You are both going through similar struggles with a great deal of grace and kindness. You both seem to be so aware of the frustration experienced in not being able to communicate.
I know your husbands cannot properly express their appreciation for your efforts but know that many of us who read your posts are touched by your caregiving. Thanks for the examples you provide for all of us!
@julesa Bless your heart. Thanks ever so for sharing. I was embarrassed to share that, but your reply truly makes me feel that I am not alone. It's a journey. Need to remind myself often. God is in charge. He has a plan, we just need to trust Him.
I put my trust in God too but it’s not always easy. It’s helpful to have someone share the journey.
Hello all. Just reread past posts. Thank you all. Husb doing a bit better..settling in I credit the Ativan he is taking and they actually give to him earlier in afternoon for what I think is Sundown syndrom. It was my suggestion. It helps with the anxiety that overcomes him like clockwork late afternoon.I hope you all have been coming well through your journeys. It's still a struggle. Talk therapy and Skill class helping as well but these 2 wkly appts. add to my long "to do lists". Having spiraling down episodes so I am told to continue…
I’m wanting to connect with anyone whose loved one has/had this disease. Any medical information would also be appreciated.
Welcome back @julesa. I included your message in the discussion in the Caregivers group as well as the Brain & Nervous System group. I did this so that you can continue to connect with @remi54 @dianajane @rmftucker @hopeful33250 as well as inviting others into the discussion.
As you know, logopenic progressive aphasia (LPA) is a variant of primary progressive aphasia. People with this subtype have difficulty finding the right words when they are speaking, but they usually still know the meanings of words. How is your husband doing these days? How are YOU doing?
Since COVID it has been very difficult. Going from daily visits to none at all. I am now able to be an essential caregiver and sign up to see him twice a week. We are confined to his room which is hard as he likes to still walk around the unit. He had lost 25 lbs. in April when his physician contacted me He was on ensure and within time he put most of it back on. Now is he has lost weight again but the facility tells me he eats well. He is no longer using utensils and eats finger foods. I did get a camera installed in his room and that has been helpful. He hasn’t spoken in years. He isn’t able to participate in activities they offer. My heart breaks for him but God must have other plans.
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