Challenges and Frustrations - Mom with Primary Progressive Aphasia (type of dementia)

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My mom is only 74, but has Primary Progressive Aphasia which affects the communication center of the brain, but memory and intelligence appear to be unaffected. She can see words and know what she wants to say, but often can't get the words out of her mouth. What would normally be a two minute conversation, often ends up taking a half hour or more, just to clear up one thing. She also has a host of other medical issues, including PMR that is an autoimmune disease, lots of arthritis, spinal stenosis which is a narrowing of some areas of her spine, sciatica, needs both knees replaced and also needs carpel tunnel surgery again in both wrists (among other things).

The carpel tunnel in her left wrist has gotten much worse as we've had to focus on other health issues, and now surgery is 8/23/2012. This is where the frustration comes in. In trying to work on getting everything scheduled, and enlist care for her her afterwards, we've had to have many important conversations. I also work long hours (not by choice, but because of the demands of the job), so finding the time to have the conversations is very difficult. I might ask a question, and she can't get the words out to answer it, or somehow isn't understanding me. So after asking the same question, in different ways, a number of times, frustrations start to rise -- particularly in me. I can't have these long conversations at work because I need to be working, but yet I have to have them with her.

I check in with her every day before coming to work. This morning, I asked a simple question, and it became a long drawn out conversation, that I didn't have the time for because I needed to get to work. I had to cut the conversation short, and now she doesn't want to talk with me today, but there's so much we need to accomplish today to be able to see the surgery happen. My sister also works a full-time and a part-time job, so it's hard for both of us to accomplish what we need.

Tomorrow we're sitting down to go over her Powers of Attorney for property and health care, which will be a challenge, especially since she has decisions to make about her health care. Then we need to go to the bank and have it all signed, notarized and witnessed. My concern there is whether we'll be able to make it to the bank before they close at 1, if our conversations again take forever. This is likely the last chance to have them signed up before the surgery, and since we've seen a decline in mom, we believe this is an essential thing to get taken care of before the surgery.

So here's what I'm looking for: (a) advice, suggestions on how to perhaps facilitate bettter communication with mom, especially when the conversations are essential (and especially if you have a loved one with PPA and can specifically relate); and (b) some support and suggestions for how to better cope (which I am not doing very well -- am actually losing it fairly often).

I love my mom dearly, and we have a wonderful relationship. But it's extremely challenging right now, and I could use all the help I could get.

Thank you kindly,
Helen

9 Comments

Things have gotten better for now, but I would still love input and suggestions from those who are dealing with PPA. Thank you! Helen
Hi Helen. I totally relate. My mother too has PPA. It's difficult to find any info. It's pointless asking Neurologist because they don't have any experience with it. They refer you to a speech therapist who also tells you they have no direct experience with this disease. Instead they only work with you for a month. Thus is just to learn how to fins other ways to communicate the best you can. I don't know if you have done the therapist yet? They recommend a communication notebook. It's a picture book basically. Divided into areas of interest. So if your mom can't think of words but you have a general idea of the subject, you can guide her to thoses pictures and she can point.
Sign language is not an option.. basically it comes down to being honest with the disease. Patience patience patience. Getting her affairs in order before she can't do it. My mom is 65. She spoke normally with a hint of a slurred word here and there. Now 8 months have passed and she can't do math, she tells us incorrect things and takes forever to say anything. She went to doc last month and marked on the health questionaire that she suffered from EVERYTHING listed! We can't trust anything she happens to get out. She's even starting to exhibit impulsive issues. Drinking others soda... Taking food off others plates etc. This disease seems to he rapidly progressing. Viki
I'm so very sorry for what you and your mom are going through, Vikilynn. It sure is a tough road. Mom has been going to a speech therapist and that has been helping some. One of the hardest parts is when she calls me at work -- a very busy job that requires a lot of concentration. It's hardest then because she can't motion or point to anything. I take her to her next speech appt. next Friday, and it may unfortunately be the last. She's reaching her Medicare cap for therapy and they link speech and physical therapy together. She has so many physical ailments, that she has needed quite a bit of physical therapy, and still needs more. Yesterday we went to our first social worker appt. at Northwestern. I think this was one of the most helpful of appts. Very caring and understanding and she really spoke with mom instead of just to us. She also really listened and heard where I'm having burnout and addressed that -- which was so good because I was then able to bring up things that would help.

Thank you so very much for your reply, and please, please let me know if you think of any tips that could help us on this journey, and I will do the same. It helps to have others to turn to. We do have a support group at Northwestern, but I've only been able to go twice because of such a busy schedule between mom, work and other obligations.

Thanks again, and I hope you have a good day today!!
Well here we are may 2013. My mother says little to nothing. Mostly just yes and ok. It doesn't matter what you are asking or if she is trying to tell you something. She started shuffling her feet last time I posted. Now. She falls a lot and her thigh muscles aren't strong enough to take her very far without tiring rapidly. She now needs a walker and must use. Wheelchairs when we go to most places. Doctor has ordered another scan to rule out a stroke. She still seems to understand what she's being told but has developed almost an unstoppable craving for sweets now and OCD behavior .
Helen. Are u still out there? What updates do u have? I didn't mention in my last post that my father died. So as of January .my mother was moved to live with me . My sister and I take turns . She stays here 2 weeks and at my sisters for 2 weeks. Tthis helps keep our sanity. She is still changing weekly. Almost unable to walk. OCD behaviors setting in. Specifically pertaining to things she worried about before this disease. Sense of time is gone. Not sleeping well. Very susceptible to suggestion. And if she wants something she wont leave you alone until its done. I've had to resort to lying sometimes when what she wants is not possible or u reasonable. I will just take the info or item and return later saying I did it. I'm adapting the best way I can to reduce her stress. She is 66 years old now. Its been a year and a half.. things are happening so fast. Has anyone else has this rapid decline? Or lost their loved one already in A shore timeq from the onset? So worried!
Helen, how are things going? How is ur moms rate of decline? My mom passed on Wed. If I can help you in any way or give you ideas for the journey u have ahead let me know
For PPA, try contacting the AFTD organization, for frontal temporal degeneration. Also try googling the ftd forum for finding other people dealing with this issue.
Hi Vikilynn,

I'm so terribly sorry about the loss of your dad. My sincere sympathies to you and to your family.

I'm so sorry that I've been away from this site. So much has happened since I last wrote. A few weeks after I last wrote to you, I was diagnosed with a very aggressive breast cancer and had multiple surgeries, chemo, radiation. All in all I went through some very difficult times, and because of the affects of treatments, I was not able to drive and couldn't see my mom very much. But when I did, she would kiss me on the top of my bald little head. She's lost much of her hair, so we ended up looking at wig catalogs together.

While having radiation treatments (along with another supplementary treatment that lasted a year), my mom needed to have knee surgery. It was then that we were advised that she could no longer live alone, and in the midst of my own illness, we had to find an assisted living facility and get her all moved. It was a bit of a nightmare at times, especially when my sister didn't carry her weight.

Then earlier this year, we realized that she was declining pretty quickly, and we could see that she needed more round the clock care. So we had her evaluated by the state, and they said that she very much needed a nursing home. Then we had to find a nursing home that would eventually take Medicaid, which was a challenge. Good news is that my sister and I worked well together by this point and did the best we could to make the transition easiest as possible for mom. Poor mom was sick the entire day of the move. She kept throwing up. Once I got her there, she felt comfortable, but was still very nauseous, so they gave her something and she was much better in no time. I think nerves got the best of her.

So she's been in the nursing home since March, and not too long after she got there, she had a seizure while she was on the toilet. Thankfully someone was with her. But this progressed her very quickly, and she's been in a wheelchair since then, and needs help with all of her activities of daily living. (We now realize that some of the events, like falls, that happened in assisted living were probably also seizures. Now she's on meds to help prevent them, and it seems to be going pretty good.) She also had some UTI's and cDiff infection. That was all very hard on her and progressed things a lot faster.

It's still hard for all of us, especially mom, because she can't talk at all anymore (a few words once in a while, but most make no sense). But she knows she's getting good care and has a good relationship with many of the people who care for her. They really care about her and blow her kisses (she loves that and smiles). She has her times of outbursts and being difficult, but we know it's the disease and not her.

So, in answer to your question, yes, I do think that things can progress rapidly. I've always been told that PPA progresses differently in everyone. I also find that there are plateaus, and then sudden dips.

How are you coping these days? I'm a bit afraid to ask. I hope that you are okay.

Sending a hug,
Helen
Helen, my Mom also has PPA. She is completely mute now, and has had this disease for about 6 or 7 years. She went from talking to writing and then the writing became very slow and hard for her. I looked into speech programs and found a very simple FREE one for an IPAD. The program is a free download called "Verbally" You can also upgrade for $99 and choose a better, less computerized voice and adjust the speed and pitch of it as well. She loved it. Unfortunately she has gotten sicker and it is very difficult for her to use her program now but still tries and can on certain days. The key is not rushing her as it just gets her more confused and frustrated. I feel for you and can only offer this advice. Love your mother everyday, her way, and hold on to and make as many memories as you can. My heart is with you. verballyapp/ ( You can check out the program on youtube.)

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