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Topic lack of insight and denial/dementia Go to previous topic Go to next topic Go to higher level

By lucybelle On 2010.07.12 12:46
Hi everyone:

I am new to this forum but have already found some really helpful words of advice by scrolling through some topics of interest. Here is our story: my 75-year old mother was diagnosed with Parkinsons 12-13 years ago, but kept it hidden from us for years as she lived some distance away at the time. She has a myriad of other illnesses (lupus/mild, terrible spinal issues/nerve and back pain, congestive heart failure and two valve surgeries), so they have been occupying more of our time and energy. Up until the past year, her parkinsons has been relatively mild and under control with medication, or so we thought. Now as I have read more about the disease, I have come to realize that many of the other issues that my mom and we are dealing with (difficulty walking, increasing loss of mobility, complete incontinence, confusion, etc) can be attributed to Parkinsons. Because of all her other health issues, there were always other things to think were at fault, and we have been to more doctors than I can count. She has lived for the past 3 1/2 years in an "independent living" facility near to my sister and myself, which I put in quotes because she gets help with alot of thing there, including medication, getting to bed, more and more household chores, etc. She has not been independent for quite some time.

In the past 6 months, and really since the end of March, she has gone markedly downhill. Walking is extremely precarious - she tires quickly on the walker and is bent over at a right angle, creeps along holding on to things when she is not in the electric wheelchair, and everything takes an enormous amount of time for her to do. She went through a period for 2-3 months with dropped head syndrome, so was unable to really eat, dropping food everywhere, along with a noticeable difference in her appearance and grooming. In addition to some pretty vivid hallucinations and periods of anxiety and paranoia, she fell four times, which precipitated her being admitted to the hospital. She then went an acute care rehab for 3 weeks, where they worked to build her strength and adjust her medications. These seem to be in better combinations now (Sinemet, Mirapex, Amantadine and Exelon Patch). Her head is more upright and her walking is somewhat better but physically not much else has changed.

Because she has always been in denial over all of her health issues and believes she can just will her way out of it, this new stage of Parkinsons has been really difficult for all of us. My sister and I have come to accept that she needs to be in a long-term care facility. She cannot live with my sister or me as we don't have the physical setup or frankly, emotional ability to be the 24-hour caregivers. As the periods of dementia grow, it becomes more obvious to us that this is the safest solution for her. However, as is no surprise, she is fighting this idea and really trying to convince everyone that she could live at home safely, "because everyone would help me". The independent living will not let her move back due to the level of help she needs, which takes the decision out of our hands (which we are grateful for). The diagnosis at the acute care rehab (excellent place with gifted therapists) was that her lack of insight into her parkinsons and her unsafe way of moving would present a continued significant risk to her. In their recommendation, she needs to live with supervision from now on, which we agree with.

Because a big part of her dementia is the denial of what Parkinsons is doing to her, she argues with us over how she is and what help she needs. I heard the other night from her that she walks beautifully, doesn't need help, could live fine with someone coming one day a week - this from someone who cannot get in and out of the bathroom without at least half an hour and an aide.

I guess my biggest struggles right now are with two things: how to deal with the dementia, particularly the paranoia and hostility as it is targeted towards me, and how we are going to communicate to her that she is not moving home. I should emphasize that my mom is sharp on many days when she does not have noticeable cognitive issues, so the periods of dementia are startling for us.

I read a helpful post a few days ago after a particularly difficult conversation with her that said experts generally recommend that you don't try to reason with someone with dementia; rather, you validate and then distract. Any hints on how to do this most effectively, or any other ideas are most appreciated.

Thanks for listening. I feel like I'm drowning right now, and what I've read here has already helped.

By Emma On 2010.07.12 16:54
Hi lucybelle and welcome to the forum. We're so glad that you found us and have already gained some insight from reading past posts.

It sounds like you have a tough row to hoe right now. You are right, the worsening symptoms that your mother exhibits are indeed part of the Parkinson's. Many of us who have a loved one with dementia find it the hardest issue to deal with. Personally, I am not bothered as much by my husbands delusions and hallucinations as I am by the lack of insight and unreasonable thinking. When he has hallucinations I just say that I don't see what he sees but that I believe he saw it (or heard it, as the case may be). If his delusions aren't distressing to him I just listen and let him tell his "stories". If they are distressing to him I say something like I understand how that might be upsetting him, or that it's interesting or something like that and then suggest that we go in the other room and have some tea or tell him that I've been wanting to sort photos and need him to help me. It usually works fairly well but sometimes you just have to wait it out.

It certainly sounds like your mother needs more supervised care. I have found that my husband listens to his doctor more than he does to me. For instance, I have been trying to get him to accept having someone come in once in a while so that I can have a break. He gets very angry when I bring it up and insists that he can be home alone. Finally I asked his doctor to talk to him about it. The doc explained to him why it wasn't safe for him to be alone and also told him that I need a break. Surprise! Now my husband is fine with having someone come in. I don't know if that would work with your mother or not. I can only speak from my own experience.

Good luck and please stay with us, we're a pretty nice bunch!

By lucybelle On 2010.07.12 19:28
Thanks, Emma. Its helpful to hear how others deal with it. My mom is pretty conversational about the hallucinations; they don't rile her up so much. Its the paranoia that is harder to deal with, especially when she directs it at me and is blaming my sister or me for something. The newest is that I overreacted to one little tumble and it's our fault that she is in the rehab/nursing, not due to her physical limitations and being unsafe. Reasoning clearly gets me nowhere, though I tried for a few minutes until I realized what was going on. As we are going to have to tell her in the next week or two that she is not leaving the rehab/nursing home, I'm sure its going to get pretty unpleasant at times.

By susger8 On 2010.07.19 09:11
Hi, lucybelle, and welcome. I just wanted to comment that Amantadine sometimes is not the best medication for older patients -- it seems to make confusion and dementia worse. That was my dad's experience with it. His neurologist put him on Amantadine, and he deteriorated very quickly. He improved after he discontinued it. You might want to discuss this with your mother's neurologist. (This event was part of what made me "fire" Dad's old neurologist and find a movement disorder specialist.)

Sue

By caregivermary On 2010.07.19 10:56
lucybelle,

PWP will tried to convince you/me that they can do everything. It is extremely challenging to distract them from what they want. In your case, you may need to tell a sad story about why she can't go back home. Basically, lie to her. I try not to do this but it does work in very difficult situations.

My husb has been using the Exelon patch and the neuro added namendia recently. I read amantadine seems to have the same results in some cases as namendia. I was surprised to learn this especially due to the fact that my husb had taken amantadine for years and his dementia really took off when his current neuro took him off of it 2 yrs ago. Anyway, I'm hoping namendia will slow down the dementia.

The movement disorder assoc with Parkinson's is a lot easier to care for than the mental disorders assoc with Parkinson's. Take your time to decide how you want to proceed. This would be a major undertaking for either you or your sister to take this on at home at this point in your Mom's journey.

Good luck and take care. We will help with any questions you have.


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