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By hatepd On 2012.04.20 04:12
Well, it's me again... My husband has become very forgetful, but continues to remind me that my memory isn't to good either! He is hard of hearing (has a virus that has settled in his ears and is being treated for this) but doesn't wear his hearing aids most of the time and continues to scold me about not speaking loud enough for him to hear me. He doesn't realize that I am screaming at him. He now seems to rely on my doing things for him that use to come natural for him. Hard for me to determine if he really "can't" or is just becoming lazy. IF he fixes a glass of water at dinner, he only fixes one, not even thinking that I might like some water also etc, etc. He had a dr's appt. today that I was unable to attend due to my work schedule. When asked what his doc said about a recent accident he had (blacked out while driving) he told me that the doc told him he would just have to compensate for his inability to concentrate. I know MOST of this sounds so petty, but it does anger me sometimes. Should I just ignore these behaviors - any suggestions????

By parkinit On 2012.04.20 19:00
I had to grin a bit when I read this. I can so relate. My spouse told me I was hard of hearing (and I've read here that many of our spouses do this to us and don't realize or are unwilling to admit that they may be talking softer due to the PD). I took a hearing test for my spouse because he asked me to and because it proved that he needed the help, not me. So we were able to adjust hearing aids, etc.

AND, yes, my spouse was constantly telling me, "but I'm not the only one forgetful in this house." What I didn't say, but was thinking was, and I'm sure you can relate, "But I'm having to think for two!" You just have to accept some things and even though you know in your heart what is true, it does seem that the PD person is last to admit that there are issues, and frankly, I'll be the last one to tell him or push this issue. They have so many other things going on with their bodies and minds . . . and as the disease progresses, it seems they are unaware of these changes.

My spouse who was diagnosed in a psych evaluation with "mild cognitive issues," mentioned that he doesn't believe he has lost any of his mental sharpness - that he just thinks slower. I don't agree, but I don't argue with him or push the issues.

How do others handle this - the cognitive decline when the spouse doesn't realize it or won't admit it? I'm sure it becomes an issue when you feel you have to take over finances, etc. I do the finances and prepare all the paperwork for taxes now because he "lets me," but it would be an issue if he still insisted on doing it. Last year he lost several papers and trying to get our taxes done was a bit of a mess.

By hatepd On 2012.04.20 22:03
Thank you and AMEN
When my father was dying off alcohol I played along with him through the dt's and everything else. Now that I'm in somewhat the same situation and know that nothing is to be accomplished by throwing everything up to him, it still is difficult. You understand...we all understand.
Thank you and good night.

By Jane On 2012.04.24 12:01
I can so relate to this. My spouse is exhibiting cognitive decline. When talking he seems to be working so hard to get his thoughts together. He was a technical writer and now has difficulties sending an email. He has much difficulty learning new things. Parknik, you said that your spouse had a psych evaluation. Was this helpful for you and did they give you any recomendations as to what can be done about the mild cognitive decline?

By parkinit On 2012.04.24 18:14
This was not helpful to me other than making me feel a bit sane. : / You begin to wonder if it IS just you thinking they are declining as they deny it vehemently. No suggestions were given. That is a good point. I will ask next time we see the psych WHAT if anything do they recommend for someone with mild cognitive decline.

I will say that one thing that is no secret too keep the mind sharp is to play games - cards, scrabble, Jeopardy while watching television, Wheel of Fortune (again while watching tv), etc., on a regular basis. My spouse RELIGIOUSLY plays cards every night - even if it is just solitaire if I'm tired.

By LOHENGR1N On 2012.04.24 19:00
Mild cognitive decline. Quite a phrase isn't it? It strikes fear into the hearts of Caregiver/Partner alike and to some extent (probably lesser) the Patient.

Mild, Marked and Severe, We know the lingo by now. How these things don't seem to get better. The nights laying awake worrying about what's next to come and when? We know there is no crystal ball to show us this information, the timing of each progression the onset of each symptom.

Or the pain! For the longest time the medical field as a whole didn't believe there was pain with Parkinson's Disease. Now pain is recognized as being part of Parkinson's Disease. I want to address the issue of pain in relation to Parkinson's Disease. We've educated to some degree the medical field on the physical pain we the patient endure with this disease. We also have to educate the medical field on the pain somewhat callously inflected upon Spouses, Caregivers/partners, Family and Friends of Patients. Many times in the "busy" lives of Doctors an exam will bring up the concern of something new. This will be a side-effect known to the medical professional who in their mind weighs it against the benefit of the medicine and dismisses the problem as less severe then what it treats. They either nod their head or dismiss it without comment ....this causes PAIN! The mental anguish, the worry, the mourning of loss of the loved one (another piece of them stolen by P.D.). Thirty seconds to a minute! That's all it would take to say "well this is a side-effect of the medicine, so if the decline starts to become a real problem we can try adjusting or something else. I'll see you next month to see if it's still a problem." Preventive medicine! Do no harm! In that short space of time They could head off sleepless nights of worry, worry of how long before we patients won't recognize faces of loved ones and friends! Mourning about slowly losing more of Us to this disease. I know not all mental decline is due to side-effects of medicine but looking up those medicines it is a side-effects of many of them.

Some will say really down in the trenches you still end up with mental decline and those results, what's the difference? The difference is if it's the medicine you have the choice of trying another. You have the knowledge that whatever is happening at the time your loved one is there still, not drifted away beyond reach. This might seem like an illusion but wouldn't coping in the moment be just a little easier if you could think we're going to try something else I'm calling the Doctor in the morning, instead of thinking Oh G-d how long will this go on before it only gets worse? I'm not being delusional here, I know there is no cure, that this is a progressing decline We are on and where it ends up. Our Doctors need to inform Us and work in conjunction with Us to provide the best standard of living and life We can achieve. This includes those Who care for Us to ally their fears of the unknown and constantly changing. To give Us hope even if that hope is a change in medication or just knowing it's the medication and not our "marbles' spilling out our ears rolling away never to return. But to withhold information thinking we don't need to know and leaving things up to worried minds in the dead of the night just doesn't seem right to Me. Take care, best of luck and hang in there.

By karolinakitty On 2012.04.24 20:38
Had to laugh parkinit....

I have told Jim: "I am thinking for two!!!!!"

As I have read further into all the aspects of dementia..I have learned that a lot of the PD meds have an affect on cognitive function....we are slowly...very slowly weaning off requip...we tried one way slowly and it threw him for a big loop including the loss of some cognitive function and mental fatigue ....

The sleep deprivation most suffer with PD adds a lot to this may think that just because they get no sleep at night but take several "naps" during the day, that they are just fine...not need that deeper sleep pattern to keep the functioning going. I have also learned that some of the drugs, requip/mirapex as examples, cause the sleep disturbance, thus causing the somnolence, thus causing the MCF.....its a vicious circle of events...but until they come up with something different....well you know......
And as Al said the worry, the mental anguish....all add to not only the PWP but the caregiver stress can be unreal at this level.....

One thing I had happen recently...
I actually had to be rushed to the ER....I had a headache on and off..mostly on for months..just wouldn't go i had migraines prior to menopause..but not since going through perimenopause..they seemed to just go wasn't like my typical migraines this was like someone was sitting on top of head and the pressure was unreal....
One night as we were sitting around talking about possible DBS....I got ...well...I know no other way to put this but plain stupid...nothing he said made sense, I couldn't get the words out of my mouth, the words i read on the computer ..were not even there...scared my guy so bad he called a neighbor over to take me in...he thought i was having a stroke or had a possible brain was scary there for a while...well they did a CT scan, because I let the doc know about the aphasia and possible tumor was his first thought....turned out was nothing but a form of migraine known as vascular headaches....the nerves swell putting pressure on the brain in areas that affect speech and though process..... but a portion of the triggers for this has to do with stress.. the other environmentals...but we really have to be careful with our poor little brains as we can lose so much of our cognitive actions due to worry and stress.....

Again I am using my/our own experience
and not a medical professional......

By Jane On 2012.04.25 12:37
I can see how getting the psych testing can help us caretakers feel a little more sane. With the way the symptoms of parkinson's fluctuates from minute to minute each day I begin to feel as if I'm not seeing things clearly. Parkinson's does bring on much emotional pain for the patient and the caretaker, which I do not think the medical profession recognizes enough.

By parkinit On 2012.04.25 22:56
This conversation has taken a 180, but I like this about this board! :)

KK - How scary for you and I'm glad it is "just" your migraines. One more thing to be thankful for - I don't have those!

There are cognitive issues with the caretakers, too, though, from lack of sleep. I'm up with my spouse 3 out of the seven nights. He gets up at 4 a.m. to take pills and awakens me 3-4 more times to turn him over, set him up and give him a drink. He seems to get very thirsty at night. When I'm working "my night shift," I don't nap during the day and I can tell my thinking is foggy. This weekend, a neighbor had asked me to feed his dogs Saturday night and Sunday morning. I told him I had a lot of things going on but would TRY to remember (laughing as I told him this).

Well, guess what? I forgot to feed their dogs. My PWP fell Saturday evening while I was out for a walk and our emergency alert called me. I ran home (luckily only about 3-400 yards) to tend to him, bathe him off (he had dirt all over him, but scrapes were not serious), and take care of a dog that had rolled in fresh horse manure during our walk (another two showers for the dog).

After feeling horrible about forgetting to feed the neighbor's dogs (and buying his animals a box of dog biscuits as a peace offering to them), I told them that they couldn't rely on me and I would have to decline from watching their animals in the future. I have my own hands full on the weekend and because I'm sleep deprived, don't think clearly. We have to be careful what we try to do in this frame of mind - I'm proof!

By 2latesmart On 2012.05.02 14:31
There is so much in this one thread that is absolutely golden - I could cry with gratitude, in opposition to my normal crying from frustration. My husband also doesn't know he has cognitive decline, and I can't understand how someone can not realize it, but I finally accept that he doesn't. How can someone not recognize that there's a mental decline when they forget how to get to a store they've gone to almost daily for 25 years? Doesn't that seem strange to him? I've stopped wondering things like that, and accept that the disease has its own process, and for some reason, that includes a lack of insight into the patient's own decline. It is extremely comforting to me to read that others experience this as well, although I am heartily sorry that any of us has to deal with it.

I had a hearing test 2 years ago, and I must looked confused when the doctor said my hearing was fine. She then asked, "Does your husband have Parkinson's Disease?" Bingo! She said it happens frequently. My poor husband doesn't have any idea that people can't hear him, no matter how often I mention it. I finally started telling him that a lot of people are hard of hearing, so he needs to speak up more.

Thank you to everyone here for being here. This isn't a club I ever wanted to join, but it couldn't have a better bunch of members!

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