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Topic Cognitive Decline Go to previous topic Go to next topic Go to higher level

By parkinit On 2012.10.24 21:40
Reflection brought this topic up in another post, but I wonder, how do you handle the cognitive decline? Today, it seemed really bad with my spouse and even though he has been diagnosed with mild cognitive decline, it seems that in the past few months there has been a dramatic change with no changes in meds.

I have assumed recently to be responsible to have everything for him when we go out - cane, money, billfold, pills, anything else he needs for the trip.

Today, it seemed especially worse as he asked after returning home, "Where did I put my billfold? What did that person say at the office? Where did I put that money? Where are my glasses? What did that person say at the office (said this about ten minutes after asking me earlier)?"

Do any of you deal with these cognitive issues? What is the best way you have found to deal with them other than much patience and calmness.

It is a bit scary and new territory for me as the memory issues seem to have worsened recently.

Oh, and he refuses to take any medicine for cognitive issues because he doesn't believe he has any problems with memory.

Thanks.

By blue2 On 2012.10.25 00:25
My husband has significant cognitive decline. We have dealt with it as it came on gradually at first and then rapidly in the past two years. (He was diagnosed in 2001 and is now 72 yrs. old.)
I'm sure my denail was stronger than his at first, but I've come to accept it now and we are both the better off for it. Cognitive impairment and hallucinations have been the most difficult symptoms of the disease for me to deal with. It is difficult not just because of all the responsibilities I have assumed for him/us, but because it is so frightening to lose this man I love who was so smart and talented and caring.
It has been most reassuring to read in this forum of other PWPs and spouses who are dealing with cognitive impairment and hallucinations. Our neurologist - movement disorder specialist said almost all his pd patients have some degree of impairment and 30% have significant issues. (I'm willing to wager it is higher than that percentage.)
What I have found works best for me is acceptance and rolling with the punches - that is - with each new forgotten skill, name, memory, etc.
We are using clozapine to address the hallucinations, but do not know of effective med for cognitive issues.

By lurkingforacure On 2012.10.25 12:50
You have probably checked this but most agonists have hallucinations as a known and documented side effect, even at low doses. I know your doctor has agreed with the cognitive decline but don't assume everything you chalk up to mental impairment progression is in fact that: pain is horribly distracting (just try to do some easy math the next time you whack yourself, you cannot!) and many PWP have pain of some degree or another most of the time. Similarly, it is hard to concentrate and remember and process if you are shaking, trying to focus all your energy on walking so you don't fall over, lift that leg that feels like it weighs 200 pounds, etc.

I'm not saying your guys dont' have decline, just that some days, depending on how the meds are working and how they feel at that moment, what may seem like progression in the decline may not really be that at all.

As for dealing with it, everyone is right: love, love, love and a good place to go cry in private when it gets to be too much.

By chroop67 On 2012.10.25 12:52
For me its been the hardest and meanest part of this disease. My mom,79, has definite cognitive decline. She is very paranoid and lives in a nursing home. She thinks every conversation is about her and misinterprets everything. I used to try to convince her otherwise but now I just go along with it. She often talks about how she is getting better and needs to look for an apartment, i just agree. I moved away from where she lives in April and she still asks me to stop by for coffee, take her for groceries....etc. I just say sure and she seems happy with the affirmative. Arguing with her elevates her anxiety and confusion. It is difficult but whatever keeps her happy........

By parkinit On 2012.10.25 18:47
Lurking -

You make some valid points about other "distractions" not allowing the ability to simply think sometimes. I get that. Thanks for bringing that to my attention.

Yes, I'll just continue to love and protect my beloved as I see these declines - with sadness in my heart, but with one that is still so full of love for him.

By blue2 On 2012.10.25 19:14
lurking -
Yes, we are aware of how pain and anxiety can impair cognitive function and certainly when they are factors memory and skills are more severely impacted. Much patience is required of us.
We learned that both amantadine and selegiline (agonists in more ways than one) caused hallucinations for my husband and are glad to be rid of them. We now list them on medical forms as substances to which he is allergic.

By LOHENGR1N On 2012.10.26 00:05
For those new to the forum and or Parkinson's Disease. Just to expand for a minute on what Lurking said about hallucinations being side effects of medicines. I've said many times our anti-Parkinson's drugs are mind altering. Which is why when changing doses or medication most Neurologists will have us come in more frequently until the level is reached. Sinemet the gold standard of our medication and a drug many of us take more and more of as time goes on is one such medicine which lists hallucinations as possible side effect. A lesser known fact is Sinemet is made from a fungi usually from rye seed. The fungi Ergot has been blamed for the French revolution and the mass hysteria leading to the Salem witch trials, it itself is a hallucinogenic and is used in the manufacture of LSD. So it's important to keep levels monitored.

In fact when you look at it, maybe our behavior and thinking problems aren't that unexplainable considering the type of medicines, the amount of those drugs and how often each and every day we take them. I'm thinking "normal" people would be so zonked out they wouldn't even be able to function up to our level. Take care, best of luck and hang in there

By carman96 On 2012.10.27 01:08
My husband also has been diagnosed with mild cognitive disorder. He is taking Aricept and I do think it helps some. He is also taking mirapex stelevo citalopram and valium and detrol at night.
Sometimes he seems pretty with it. Sometimes confuses things. Sometimes really zoned out.
It's frustrating and terribly sad. But I tell myself it is what it is and I have to accept that he is not the man he once was. But I know that man is still in there somewhere.
Also I never stop being his advocate. His Dr. once called me "the enforcer". I like to think that is a positive thing.

By Shedog On 2012.10.27 01:53
Hubby has just started this... I realised when it happened that it had to be either another step in the PD or the meds... he takes senemet and epilem (he has or had epilepsy), he was taken off the epilem and put onto phenotoine (sp), but has since been swapped back again, apparently the phenotoine (sp) can make the tremors worse or so his neurologist tells us. It would seem that I am going to have to go to the family lawyer and get his Enduring Power of Attorney done along with his health and well being Power of Attorney as well... I have been trying to put this off... Don't really want to accept that he has declined this much... I know that the man I love and married is buried in there somewhere and sometimes I get glimpses of him. It is hard to believe that 8 short years ago, we were having fun and laughing and showing our dogs, away most weekends. Now we stay home and he just sits and stares out the window day after day... I am getting used the hallucinations... but they are hard to deal with.

By Shedog On 2012.10.28 02:40
David has a really bad afternoon of hallucinating... It has me scared that he has lost his marbles. He can see spiders crawling everywhere, but he says that they run away when I put my hand down to where he says they are... I am ringing our GP in the morning to get him an appointment, I want the Dr to rush refer him back to the Neurologist... I think it is his meds, I am not going to let him take his night ones tonight... a meds holiday might help, I have never ever done this before, but seeing as how he is getting worse... I have to do something, he is freaking out here and I am slowly starting to too....

By phoenix On 2012.10.28 21:46
My husband is having rapid cognitive decline. The neuro cut all his meds way down to deal with the hallucinations and cognitive issues, but it just keeps getting worse and worse, and now he shakes most of the time as well. I can't help but think that maybe he should just go back on requip and at least be physically better. He doesn't know who I am much of the time and thinks I am a variety of people from his past. I will say though that since the meds were cut down he is less nasty than before. We had some really unpleasant incidents, including physical violence. I really don't think the doctors really know, it is all just a big guessing game. I don't really believe the cognitive stuff is reversible - he can't tell time, use the remote control or the telephone, turn the shower on - the list goes on and on. Breaks my heart...

By chroop67 On 2012.10.29 12:51
We are at the point where we have to decide for Mom what is the lesser of two evils. Hallucinations/paranoia/dementia with fairly good mobility and no shaking. OR limited mobility with diminshed mental issues but increased anxiety/fear due to the sudden mobility decrease. We have chosen mobility as i believe the cognitive decline will reign supreme regardless of med reduction but I think her not being able to move would terrify her.

By Shedog On 2012.11.10 03:12
I had to call an ambulance for hubby two weeks ago... His hallucinations got so bad that he was terrified to stay awake and more so to go to sleep... Gawd it was awful... Long story short... turns out it was his meds and he is being weaned off Amantadine permanently. Apparently it makes the hallucinations really bad once they start. His tremors were really awful and he couldn't feed himself and kept falling over... Now after two weeks in the hospital, he is using his walker all the time, his tremors are back to a manageable level and the hallucinations are completely gone. I won't say I had an easy time of it, because I didn't... calling the ambulance was the hardest thing to do... he was so scared that he would put straight into the psychiatric ward... I have to admit that I was afraid for him as well, but he went into a medical ward. I hope I never have to go through this again. It was a very scary time for both of us... Our kids live miles away from us, and neither of them (that live here in NZ) could make it to visit him, but they did ring him regularly.

By jaxrock On 2012.11.10 07:36
I can certainly relate to each and every post on this subject...........it's awful....the cognitive decline is so upsetting...and it gives all the responsibility of keeping finances in order to me.......whereas he was the "business" brain in the family....

Six months ago, his neurologist put him on the Exelon patch at the lowest dosage.....just recently upped the dosage......

I must say, my husband has seemed to be able to think clearer once he started on the patch..........he is writing his memoirs, and is now able to focus and write more. He still can't handle the family finances.......but he can talk intelligently about real estate, investments, etc.....whereas before the patch, he could not.

I hope this helps some of you..........it's worth asking the doctors about...in my husband's case, there have been no hallucinations, no bad interactions with his PD meds..........(requip and Ambien were the culprits in the past....)

I think the cognitive decline is one of the worst parts of PD............it affects every part of our lives.....

Good Luck to all...........

By tipplelady On 2012.11.11 12:06
My husband was a theatre major decades ago and is still a good actor. anyone can tell something is wrong with him but even doctors are sometimes fooled. He is making very poor decisions on his own. Last week he applied for a credit card on line bought things and if I hadn't found a letter in the mail I wouldn't have know probably till the bill collectors. He is now angry that I asked him not to do that again, it is his money and he can do as he wants with it. I have his power of attorney but he would just cancel it if I used it to stop him . He knows the president, the day, the year, things like that so he fools people. leaving isn't an option____
I love him. We have been together 41 years
and inside I know he loves me still. In many ways he is in denial even after this long.

By Laurel On 2012.11.11 23:32
Oh, Exelon YES! It, and Nuvigil, give my love his brain back. Most of the time. But he too is writing a book and on good days he can spend the whole day writing.

It's been a life-saver in my house.

By whyhim69 On 2013.02.17 23:05
My husband was having cognitive issues but since he has started drinking lots of fluids, his cognitive issues , fogginess and low BP issues have ceased. It looks like he was dehydrated for over a year...wow if it cold always be as simple as drinking more water, etc! Simple fix, unfortunantly PD issues are NOT normally this easy to fix!

By annieb5767 On 2013.02.19 17:38
The cognitive decline is going to continue. There are many simple things we caregivers can do to help.Most importantly,we must remember that this person who is cursing us and ignoring our requests is not responsible for their actions or thoughts. Have you ever been delirious? You say and do things that you would never ordinarily say or do. Forgive your loved one as you would wish to be forgiven under such circumstances.Remember, it is Parkinson's -the disease- that you are witnessing.Always remember the essence of your loved one. Keep pictures throughout the home to remind you of your loved one. Re-read old love notes and letters. Touch his handwriting and remember the love you have been blessed to share. Share old familiar stories in your loved one's clearer moments. When I see my love slumped over and barely responsive I search for the pieces of him that are left. His precious smile is the same as it was in that photograph on our dresser. He was just nineteen and so handsome in his Army uniform.His laughter is still delightful to me as he tells stories of good times he and his buddies shared while growing up.(I've heard the same stories hundreds of times yet,I am the one who prompts him to tell them again. I know they will lead to that wonderful laugh.)He is the same person I always loved. He did not choose to have Parkinson's. Except for the grace of God-the shoe could be on the other foot. This man was COOL! He could shag with such grace. (By the way, Parkinson's disease allows you to dance beautifully when you can't hardly walk at all.)We used to dance in the game room and I foolishly took it for granted. If I had known at the time that it was our last dance,I would have memorized every detail of the night.My advice about the cognitive decline.....If you see your loved one slipping away, hold on with all the love you can find.Whatever little rituals you have had in your relationship,build on them. For example,I tell my love,"Rest darling,I'll watch over you." And, he can peacefully slip back into restorative rest. That was a little phrase that I often told him when he came in from work and was tired. As for seeing things that aren't there. We must realize that this is their reality. The Parkinson's person cannot come into our world. We must go into theirs in order to relieve their fear and anxiety. "There are boards and nails on the floor? "Don't worry,I will have the guys pick them up and put them in the trailer."Don't argue that there are no nails and boards. It will only make matters worse. They are looking for a solution to a problem which is very real to them. We must do what we can to help,because they can no longer find solutions in their world. I'm going to try more water. We need all the help we can get.

By jcoff012 On 2013.02.19 17:54
Annie, how did you become so wise? Your love for your husband literally jumps off the page and wraps itself around one''s heart! Thank you for writing...as we travel down this path, I hope we all become as true a testament of love as you are for him. Thank you for posting. Jane


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