For those who care for someone with Parkinson's disease
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By formydad2014 On 2014.06.23 15:22
Hello,
By way of introduction, I am very involved in my father's care, who has had PD since about 2001 or so, diagnosed in 2007. He and my mom live by themselves, but I am about a 2 minute drive away. He's between stages 3 and 4, depending on what kind of day he's having, I would say. Some days he can't get around much, other days he's like the energizer bunny. Which leads to what I'm looking for advice on...
He has always had trouble organizing things, but since the PD has progressed, it is like a squirrel with ADD trying to do things. He has all sorts of odd projects going on at once, and seems unable to complete any of them. He was taking WAY too much Sinemet for a while, and would stay up 1/2 the night sorting nuts and bolts until my mom would yell at him to go to bed. We've since had him cut back on his medicine and are monitoring much more closely. However, there are days where I guess he feels he wants to get something done, and will pop an extra Sinemet or two (he's also taking a small dose of Tasmar, which is like Comtan). On those days, he will leave the house saying he's going to the store for milk and bread, for example, and come back 5 hours later with $200 in groceries and stuff from three or four different stores for projects that make no sense. He gets angry if you try and imply that he's wasting time, or making the yard look junky with all this "stuff".
I feel so awful, because my dad was as sharp as they come. Oddly enough, when he's not physically as active, or on days when he's more stiff, his mind is clearer. We have tried to point out the connection between this behavior, and too much medicine and will make some headway, then he slips back again.
In your experience, is this behavior due to the PD, the Sinemet or both? He is having DBS surgery at the end of July, and we're hoping that will allow him to cut back the Sinemet.
Unfortunately, my mom is kind of checked out in terms of dealing with caregiving. He says she doesn't help him, she says he spends all day doing stupid projects and then burns out and she has to do everything. I am an only child, so am definitely caught in the middle.
I've been lurking for a while, but in reading all the posts, it seems like you are a group that has experience with exactly what's going on (on so many levels) in our lives.
I wouldn't wish this disease on my worst enemy.

By LOHENGR1N On 2014.06.23 16:11
formydad, Hi and welcome to the forum. My self I don't do stages, many will but really when you have P.D. you have P.D. and with medication you can seem to go from stage3 back to 2&1/2 for awhile then back to 3 again. I always say I could be late stage 5 of getting struck by lightening or hit by a bus for all I know, but that's just me personally.

Seems like You're pretty observant correlating the increase in activity (increase in med's) to foggier thinking. Our medication is very mind altering as it tricks or replaces neurotransmitters in the brain. Stimulating parts or suppressing other parts all hopefully in a delicate balance to help Us function. Popping an extra one or two without the Doctor's ok or knowledge shouldn't be done and can actually hinder our care rather than help Us. I always remind everyone to run changes even in diet past the Doctor first. As in all aspects of life if before P.D. you were helter skelter organizing you will be with P.D. too for the most part. Sinemet is a wonderful drug, it is the best We've got to combat P.D. and the loss of dopamine in our brains, that said it is also a powerful medication.

Many medicines are made from ingredients that alone or not processed could be dangerous by themselves. They use arsenic in some arthritis medicines, Belladonna in some cardiac medications and in Sinemet they use Ergot (a mold found upon gains and used in manufacturing LSD among other medicines) Taken at the right dosages and times these medicines can and do help tremendously Abused and they can have unwanted effects. I don't want to scare anyone just a heads up and reminder to work with the Doctor on dosing portions and schedules. And why our drugs can be so addictive and always slowly withdrawn never just stopped!

Good questions I hoped this helps some, again welcome to the forum and keep posting We're all here to help. Take care, best of luck and hang in there

By jcoff012 On 2014.06.23 16:16
Hello, Sweet Daughter,
My husband has PD, but his mother had it for 22 years plus, and in that time, my beautiful sister in law, seven years younger than us, was very much involved in her care. She was the one who went to doctor's appointments, took her to get her hair done, etc...We lived across the country, but I sent her weekly gifts for several years, called her twice a week, and my husband flew back several times a year to give my SIL a break...I value wonderful daughters like you. You are so loving and caring, often sacrificing much of your own life for your PWP. Bless your kind heart.

All that said, I think, if I may say so (others will come on and give opinions, I am sure), what you are facing seems to be "normal" with PD. My husband was OCD before PD, so the things you describe seem normal to me...not really normal, but he organizes something, then goes back and reorganizes...measures the wall several times before hanging a picture then takes it down and measures again...he lines up his shirts by color, stripes, long sleeve, etc...lolol

My husband also loves projects...he always has several things going at once...example...he is carving a beach house sign for my SiL *it is 5 feet long* and making our grandson a Legos table with compartments for his Legos and he is planning the new patio he wants out back...I am used to it all!

My best suggestion for you is to do what my MIL's doctor advised my SIL to do...start a journal so that you can note behaviors, meds taken, etc. and bring it to the next appointment. My husband's neuro has email and told us to send any changes or questions to him between visits. Is that a possibility?

Good luck. Welcome to the group.

And, as someone *me* who is going through this disease on a daily basis, try to not be too hard on your Mom...she is tired and at times feels this disease is leaving her alone and lonely, through no fault of anyone...PD is a hard one. It is relentless...All we can do is take it one day at a time and talk it out here and with others we love who will listen.

Try not to feel in the middle because you need to live your life, too...Laugh, love, and take care of yourself...you ARE worth it! Hugs and good luck. Others will be here soon...I was checking email, so I saw your post first! Hugs, Jane

By HangingOn On 2014.06.23 19:55
ForMyDad, thank you for posting this. My PWP does the same thing...starting and obsessing about projects and then others are half done. I wrote it off to the illness progressing. Thank you to those that responded, I will have to bring it up at the next appointment.

By formydad2014 On 2014.06.30 14:43
Thank you all for your responses.

I am really struggling with how to help my mom help my dad. It's like she's completely unaware of the issues that come up, even though this has been going on for at least four years now, albeit much worse over the last year.

For instance, she wanted to plan something for my son 40 miles away the week after my dad has DBS surgery, with her being the one to take him to this camp and pick him up. When I told her that it just wouldn't work, because dad would be a week out of surgery, and doesn't he have an outpatient procedure this same week, she got angry and said "Fine, this is like a once in a lifetime opportunity, but whatever." Now, this is a camp that is run every summer - it is NOT once in a lifetime. But my point is that she didn't even correlate needing to be around the week after my dad has surgery. She's in complete denial that the things he's doing are due to the PD - she's convinced he's doing them on purpose.

I understand that caring for your spouse isn't something you can prepare for, esp. with a neurological disease which affects personality as well. However, I'm not sure how to get her to understand that she needs help and support. She refuses to see a therapist or go to a support group for caregivers ("I've been to enough therapy in my life - I don't need any more").

My dad is up by 7 or so, and my mom will not get out of bed until around 10. She generally stays in her pajamas most days, unless she HAS to go out. She is clearly very depressed, and with good reason, but although she's on anti-depressants, they clearly aren't working anymore. So some mornings if dad is having a hard time, he can't get any help because my mom won't get out of bed.

Does anyone have any suggestions as to how to motivate her to seek help, so that she can be more of a help to my dad?
My husband and I are there a lot, helping etc., but we can't be there all the time.
She blames him and he blames her. It's a vicious cycle. He does go to the VA (we are in the SF Bay so care is good) - should we contact a social worker or something to come in and talk to them? Or would that be overstepping boundaries do you think?


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