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about 7 years ago
Judithmft said...

Worrying about this stuff long distance is so hard!  My heart goes out to you.

I am only just learning about Parkinson's recently, but I wonder if some of the emotional volatility and your dad's behavior is due to the disease or the meds?  He may not be capable of healthier communication.  On the other hand, do their interactions seem different than before the Parkinson's or is it just more of the same?  Pre-existing dysfunction is sometimes exaggerated by illness.

I also wonder if you can communicate your worries to your mom's and dad's doctors so that the next time they go in for appointments, the doctors can keep an eye out for the problems you are describing and give both your parents some recommendations.

about 7 years ago
LauraL said...

I think your mother needs some assistance. An aide, perhaps live-in, who can help with the physical work so she can rest, too. You might check our Local area of the site, and/or check with their state's agency on aging for resources for assistance, as well. Let us know how things are going!

about 7 years ago
Rebecca said...

Hi Anonymous,

I agree with Laura about getting your mother some help.  Also, if they are able to use the internet, you could use "Skype" to make cheap video calls to the them and just check in and have them check in with you regularly.  Sometimes just being able to see their faces, helps ease some of the anxiety. Good luck!

about 7 years ago

Hi Everyone,

Thank you for your lovely support!

The reason why they don't get any help is because of cost. Does anyone know about the average cost of hiring someone? Also, since most of his problems occur at night while he sleeps, I don't think either one of them are that comfortable about hiring someone as a live-in. *sigh*

My mom sent me a txt message saying they are alright and for me not to worry....and that she was just tired and said a few things that was bothering her. How can I not :( I notice her ageing, tired, not eating well...I've even recommended her to go see a naturapath.

We used to Skype...I need to organize a regular time with them to chat.

Thanks everyone!!





about 7 years ago
TheGrandChick said...

I'm with you on why a live-in aide won't work. We had a heck of a time trying to explain to the agency we were using to get an aide for my grandma why having someone live-in wouldn't help: because my grandma doesn't just need someone there in case she falls at night, she needs someone there to tell her it IS night, 'cause otherwise she's up getting dressed at eating breakfast--and calling friends, doctors, etc--at four o'clock in the morning! So, yeah, I totally understand why having someone who's going to be asleep at night isn't really a viable option.


As for cost...man, I'm sorry. Honestly, I don't even know how much it would cost (my grandma had long-term care insurance, but I bet someone else here could help you with that!), but I can tell you this, though I wish I didn't have to: as expensive as live-in care is, it's unfortunately much worse to do 24-hour, non-live-in (for example, two 12-hour shifts). Have you considered maybe trying to afford someone for just a few hours at night, to give your mom a break? Maybe find someone who could do a midnight-to-6am shift, or something like that? That would theoretically cover at least most of the night (which sounds like your dad's worst time), and give your mom six full hours of rest, if not real, dead-to-the-world sleep. Not enough, I understand, but it would be something.


In any case, good luck to you and your mom. I hope things get at least a little easier for both of you soon.

about 7 years ago
Rebecca said...

My best friend's mom and dad are in a similar situation.  Her mom is angry at her dad, etc.  Their solution was to have the mom sleep in another room, and then bring in an aid at night for 1 shift 2x a week during the workweek. Just so the mom could sleep.  Then on weekends, 3 other siblings come in on alternating weekends for a day to give a little break.   This is working really well.   Can your brother take a weekend night?  Good luck!

about 7 years ago

When I first started reading this post, I really thought you were my sister posting on here.  My family's situation is almost exactly the same.  My father also has parkinson's and was diagnosed in 1998 or 1999.  He is almost 61.  My mom is dealing with the exact same thing that your mom is.  They don't communicate well and they just don't trust each other anymore.  I don't know why they won't go to a counselor.  My dad is impossibly stubborn and won't listen to the doctors.  My mom has even threatened to leave my dad b/c mentally and emotionally she is just completely drained.  Unfortunately I don't have any advice because my sister and I are still trying to deal with the situation.  Good luck to you and if you come up with any solutions or ideas that help, please post.  I would love to hear any ideas. 

about 7 years ago

Dear All,

Lately, my mom told me that both of them have simplified their life a bit more. As some of you might know, with PK and the medication, the patient has this drive/need to keep busy and active. My parents used to be in church bible study, church choir, community choir, golf club, etc. They decided to cut most of those down to have time to relax.

Unfortunately with the recent economic pressures, I think my mom feels even MORE pressure from work. It's the last thing she needs.

Luckily, my brother is now calling them once a week. I've asked my auntie to do the same. I am also in constant communications with them via email or phone. I think this help my mom to handle things better emotionally at least. This seems to help a lot...esp for my mom. I strongly suggest you and your sister (and whoever else that is close to your parents) to keep that communcations going...letting them know they are loved and supported.

Please, stay in touch.





about 7 years ago
Lisa B said...

It was great to hear an update from you! I was wondering how it was going. I'm really glad to hear that they've cut back on some activities in order to be able to have some more "down time". That's SO important, especially with your mom still working full-time. I feel for her!

I also love your idea of having other family members call them once a week or so to check on them. I've never tried Skype but I keep meaning to do so! It seems like a valuable tool, especially for long-distance relationships.


over 6 years ago
shopper said...

When was the last time your dad saw the doctor? Does your dad take anything for his moods? I am also in my 60's and have Parkinson, but see my doctor often. Many times my prescription needs changes. Exercise is so important too.

over 5 years ago

From your father's behaviour changes, have doctors evaluated him for Lewy Body Dementia? It is a form of Parkinsons that is not good,. but it brings on hallucinations, terrible personality changes among other symptoms. My husband was diagnosed with Parkinsons, but after a couple of years of watching him, the neurologist diagnosed him with lewy body.

over 4 years ago
2l84me said...

This is almost to familiar. After reading trough these posts I realize Parkinsons seems to do this to all families. In my current situation I am the oldest son watching my dad kind of go nuts from this parkinsons disease. I am still reliant on him, but do not live with him. My mother has to be there 24/7 for him and she gets very worn out. Its hard to be around my dad. Hes so depressed and he used to be so athletic and since he got PK at 50ish it has changed him mentally more than anything. He crys all the time, like at comedys in the theatre and sometimes he seems insane. I don't know what to do. He deals with it sometimes but whenever you ask how he is doing its the 1st thing he brings up. He is pretty miserable alot of the time and I love him but i dont know what to do to help i dont know how. Any one please let me know what you have to say??? ps: His symptoms seem worse earlier in the day untill about 1230-1 than hes good till like 8-9 with meds but the meds make him loopy as heck and really irrational and childlike towards the end of the day.

over 4 years ago

2184me, I feel your pain and I am sorry to hear you are going through what we have to as well. I don't wish this on my worst enemies.

Update: Father has become progressively worse with the meds. According to mom, Mirapex is the worst. He looks like he's possessed when he takes these. He gets these weird hallucinations and all of a sudden will believe something has happened when it has not. He has been telling all his friends and relatives that my mom (who's been so devoted and supportive) is trying to steal his money???

Now he's even getting violent. He's pinned her to the ground before and have taken a drill or hammer to the door trying to get into their bedroom. He's even "locked" her in a few times. He'd disconnect all the phones, take her cell phone, take all car keys, and even shove paper down a car engine....I feel so helpless. My husband and I just had a baby recently and it seemed like he couldn't care less. All he cared about was going out to do his own thing. Which is another thing. It's scary how he still insists on driving. He's ram into the garage door several times.

Mom has quit her job to take care of dad. They are now nearly broke. He's even become addicted to chocolate/candies and wouldn't brush his teeth. He's removed 9 teeth. My brother and I are helping them with the costs of replacing his teeth....but I feel like it's all moot. He will continue to ruin his teeth and health. My brother remains hopeful. He's taking dad to a PK specialist in December and asked mom to control his meds. Yet, I still fear for my mom's health and safety. I have lost my faith. It's been progressively worse in the last 4 years....and dad's made so many promises to get better. It's not his fault I know but does it make it any easier for us loved ones?

All I can do is pray.

over 4 years ago
momkelly2 said...

Hi worried in Sydney and 2184me

PK is a devistating deases. the halunisations are as real to him as the actual chair in the room. My mom would get the worst when her meds were off. the timing of meds moves closer together as PK progresses. and the timing of the med is increasingly important. Make sure if the meds are 8,12,4,and 8 that he gets them at 8,12,4, and 8 not 4:30... and 745... and other worse dose gaps. because that can keep them off kilter. also he may need stronger meds in the morning to get going and less during the day..

as the meds wear off the hallunications come.. and they are real and vivid to them. my mom was once on the wrong floor in her head.. and I actually had to get her to believe I was with her.. and we got on the elevator to gether and she pushed the button for the 1st floor.. and I got out first so she could come to me. so I could get her down.. all while she was safe in her bed in her room!!! but it was all real to her. and parinoid.. OMG.. YES!!!! he may need an antidepresent.. or make sure there isn't an infection in his system.. as they age.. (Parkinsons is a form of rapid aging..) infections can make them crazy. I know I didn't believe it either.. but I saw she had a UTI and with meds she was sane again.. so.. do look into it.

do not allow anyone to give him Risperdal..(sp) it messed my mom up big time. it is a dopamine antagonist.. and PK patients are low in dopamine to begin with.. big MISTAKE!!! and I told them.. they did it anyway.

if you can bring a Visiting nurse in through out the day or at night.. to give your mom a break do it. as long as you can keep him home the better things will be. well the more control you will have. the nursing home esentially did my mom in. she fell needed rehab.. other than that she was good.. she was failing yes.. but not that fast.. they wouldn't give meds on time.. gave her risperdal.. and she was dead in 8 months. and only 6 years into parkinsons. and the last 4months she was so bad we were praying for God to take her home.. so in less than 4 months they had messed her up.. because they miss managed her meds.

also both of you look into hospice... had we known we could have had them sooner.. we would have. they are AWSOME!! they are so helpful.. they work with you.. not with their schedule... I can not say enough about them.. they took the burden of arguing with the nursing home.. they can help in home too as far as I know. look in to it. it can't hurt.

if I can be of further help let me know.. it is a tragic time.. I know. God Bless you both and your families. not an easy time.. let me tell ya..

over 4 years ago
gleonard said...

My mother has had Parkinson's Disease for 24 years. Our stepfather did not take care of himself and was constantly worried about her. We lost him to cancer almost four years ago. My sister and I killed ourselves the next three years to take care of her, work full time and take care of our own children. We finally gave in and had to place her in a facility. It was the hardest decision we have ever made, but this disease is very debilitating and comes with a lot of anger towards their loved ones. It is not a healthy environment for the family to try and do it all. Please tell your mother there are a lot of places (passport) for assisted help at their home. She needs a break or I am afraid you could lose her first. I think you know that, but it happened to us and we were devastated as I'm sure you and your brother would be. Help her get some help. That is my advise. Good Luck and God Bless

over 4 years ago

Since this thread is very old (three years) any comments or advice may be missplaced. If you are still in the same situation, please get some help. AND ask the neurologist to end the Mirapex. Research has shown that this med causes many of the behaviors that are troubling. With you in spirit - my husband has been diagnosed for over 29 years - he is 69.

Say strong.

over 4 years ago
geronimo1983 said...

I have a good friend with Parkinson's. Her husband is taking very good care of her, but she lost a lot of weight, and doesn't get around well these days. As for my situation, my Mom passed away earlier this year. She was ill with numerous things. My Dad only has slight dementia, at 91 1/2! My three brothers and I all work, trying to make a buck in this economy! What we do, is, we have a WONDERFUL caregiver during the weekdays, 9-4 pm. Then, one of us gets to his house at 4 and stays overnight. We rotate so that, with 4 of us, we actually get a "free" weekend a month, where we can go out of town, if we want. We try to fill in the weekends best we can, taking my Dad out to lunch, etc. I don't know if it matters, but our caregiver is Filipino, and has become part of our family. The house has never been so clean and organized! We pay her 15.00 an hour. Money is tight, and there will be no "estate", but it is well worth it! Hope this can help someone!

over 4 years ago
billbarnett said...

Your mom is taking on too much. Get them both into support groups. Advice from a PD shaker!

over 4 years ago
Sunbeam said...

I have PD. Have had it for the past 9 years and am 62 years old. I believe my coping with PD is more because I am close to my God who strengthens me. I try to help myself useful in all tasks and even volunteer with support groups and other social services around. This keeps me from looking at my discomforts but help others instead. I am a member of a very caring Parkinson's support group here in the Philippines and we have quarterly forums free of charge wherein lecturers talk about PD and how to deal with it. Yes! We can! Am A Sunbeam and can be yours too. :)