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How do you know when to hire outside help?


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#1 tedybrs

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Posted 06 September 2012 - 08:03 PM

I hired someone to stay with my husband 3 days a week for 4 hours, so that I can run errands. I go for lunch, meet up with friends etc. After six weeks of listening to "what are we supposed to do" ( the caregiver and him) I let her go. So I am back to square one. I do the laundry, cook the meals, do the shopping, bills, mail,and am the chauffeur etc. So when is the right time to get help? Thank you. Harolyn

#2 Golden01

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Posted 08 September 2012 - 10:35 AM

Your question is a good one and I don't know that I have the right answer as I think it is probably different for everyone. My husband just retired on disability and can still drive so I'm not facing the questions that you are at this time. Here's my thoughts though, the right time is probably now as you have a wonderful list of things you need to do while the caregiver is there. Maybe the caregiver wasn't quite the right kind. Was the caregiver from a home health agency that provides a range of care, if so, they may have ideas on how to structure the time so the caregiver and your husband feel there is some benefit. I have an elderly neighbor that has had home companion type caregivers for about two years now. At first just in the daytime hours and now 24/7. They are amazing women. They take her out to lunch, to get her hair fixed, to the grocery, make sure she gets to watch tennis on her television, etc. Would there be a hobby or games they could do with your husband? Do they do light housekeeping? If so, could they do the laundry, fold clothes, etc. to help ou out. Most likely, you'll have to be very specific. Seems like I had a link to a caregiving website that I thought might be useful down the road to me. I'll see if I can find it.

Hope others who have been iny our shoes will have some thoughts too.

Edited by Golden01, 10 September 2012 - 09:14 AM.


#3 Golden01

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Posted 08 September 2012 - 10:38 AM

One more idea, my neighbors caregivers prepare her meals. Could your caregiver do some cooking so when you get back, you and your husband could have a meal together without you doing all the work? It might be just the caregiver putting a roast in and adding the vegetables so it's done when you come home! You will probably have to plan it all and have the groceries but it would be like a night out for me if someone had it ready!

#4 Golden01

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Posted 11 September 2012 - 07:32 AM

Sunday's Arizona Republic had a good article on challenges faced by caregivers. Did not focus on PD but more the challenges families, especially women face. Here's the link: http://www.azcentral...enerations.html

It also had a side bar with info from the National Family Caregivers Association. Looks like they have some good information too. http://www.nfcacares.org/index.cfm

Good luck to you.

#5 hkewf

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Posted 23 October 2012 - 12:59 PM

Harolyn - I don't know that it is ever too early to at least think about outside help. Recently, my hubs with PD and I decided that it was time to have some help with housecleaning - it's just been getting away from us. I thought we were on to the solution when I met with the neighbor's cleaning help. Unfortunately, the helper that I met was substituting for my neighbor's regular help, but of course was more than happy to provide us with the same cleaning services. I don't think this arrangement is going to work out for us. I initially decided to approach the cleaning help because our neighbors are very particular and I figured that the services must be working out well since she was showing up week after week. With the substitute help, I don't know anything about her and her recommendations from others could very well be bogus. I feel like it is always going to be nerve wracking finding just the right person to help out with whatever the need at hand is. Also, after talking with my neighbor and finding out that the substitute help did not perform as well as their regular service, it seems that a very specific list of what you want someone to do for you is definitely in order. So, I will continue to look for cleaning help and good luck to you in your search for companionship assistance... that is what you were after, right? Or perhaps more of just someone to watch after your husband so you wouldn't have to worry while you were out and, while she/he was at the house with your husband, perform general help with house duties?

#6 hkewf

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Posted 24 October 2012 - 12:28 PM

With my rambling on the topic yesterday of help, I think the bottom line or take away is this: start looking for whatever help you think you might need even if you don't need it right away, because it may take a while to find just the right person. If the moon and stars align, we will all have just the right people lined up to help exactly at the moment when we need the help the most. :razz: I could be wrong, but I think this is applicable to both PWP and their care partners alike.

#7 Golden01

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Posted 24 October 2012 - 09:23 PM

I think it is really hard to find the right people to help when you need it. We hired a cleaning service last year when I had several surgeries for breast cancer and my husband with PD was going through a bad reaction to medicine. Now, almost a year later, I learn that they used something on one of our toilets that scratched it so it cannot be easily cleaned any more! My husband cleans that bathroom and hadn't told me until recently. He takes care fo cleaning that bathroom.

#8 hkewf

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Posted 24 October 2012 - 09:32 PM

Oh, Golden, I am soooo sorry!!! :evil: I do know how you feel... not that I have a scratched toilet, but other plumbing problems due to a less than stellar contractor (bathtub leaks when one takes bath, but doesn't leak when showering - I looked online and think maybe I can fix it, just have to buy something called a 'drain key'... we'll see). Like life isn't hard enough already. I really feel for you - I can't even imagine - the double whammy of you and your breast cancer and your hubs with his PD. On a much lighter side, is having your hubs clean his own bathroom the secret to a long and happy marriage?

#9 Golden01

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Posted 25 October 2012 - 08:12 AM

I think you might be right. We have been married almost 37 years and had our own bathrooms for for nearly all of the last 34. Actually, he cleans mine too! Maybe that is the secret of a long marraige. I cook, he doesn't! The scratched toilet isn't such a big deal (he's the one taking care of cleaning it and we can always replace it if it is too much trouble - except we live in a "historic" home so finding the right one the last time took a bit of work). Last year was really hard. He was just starting a short term leave for PD (supposed to be five weeks) when I started down the treatment path for my breast cancer. Unfortunately, he had bad reactions to some of the medication changes and ended up being off work for five months instead. The up side was he was home for my surgeries and all the many doctor appointments that followed. The bad news is that because of medication changes there were some times it was like he was "lost" to me. In fact, recently we were talking about something that happened about a year ago when all of this was happening and he really doesn't recall a lot of the details from that time. He was able to complete both Big and Loud therapy during his short term leave. He did go back to work part-time and then retired on disability last April. This year is much better for both of us. He manages his PD well with the medications and lots of exercise which he has time to do now that he no longer is working. His work was very time pressured and stressful. It was hard.

#10 hkewf

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Posted 25 October 2012 - 04:18 PM

Okay, so I have to lament that I have clearly not 'trained' my husband quite like you have! Prior to PD, hubs did most of the cooking and I did most of the cleaning - although, I do love to bake! I don't hate cleaning, but I am not one of those folks that gets excited about cleaning either. With the onset of PD, he started suffering from severe muscle cramping (aside from losing smell and taste) and just can't chop/stir/etc like he used to without being in a lot of pain. He certainly does what he can, since he still enjoys it and I appreciate him for it. In fact, it used to be something we'd do together - listening to music, undertaking a complex recipe, enjoying some wine while we were at it. I think those days might be over or at least postponed for now. So before I get all weepy, let's get to your toilet first - it's not even so much that it's scratched, right? It's that you paid someone to care for it as your husband would :mrgreen: and they didn't. On top of that if you wanted to replace it, it's not a big deal, but it is just one more think to add to the pile. Just when you think you've made life a teensy bit easier for yourself, it turns out that it wasn't that way at all.
As far as everything else, it sounds like it was very hard. I can't even imagine. One big thing at a time is plenty. Did you have any other family or close friends that were able to provide emotional support for you or your husband at that time? We live far away from all of our family, although I know that my parents would be on the first flight out if I asked for their help - they are both retired and enjoying the good life. Back to you for just a moment, because I think from time to time we get lost in the PD shuffle (NO PUN INTENDED!!), how are you doing, if you don't mind me asking? Are you free of the breast cancer - were your doctors able to surgically remove all of the cancer?

#11 Golden01

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Posted 26 October 2012 - 01:03 AM

Thanks for your kind words. Yes, the doctors were able to remove the cancer with two surgeries (first a lumpectomy that wasn't enough and then a bilateral mastectomy that was). We had great support. One sister lives a couple of hours a way and came and stayed 10 days or so with the first surgery. My other sister came from out of state and stayed a week for the second. That's when my husband was having his worst response to medications. She also has Parkinson's Disease so was a real help. She even went with him to an appointment with his MDS. My mother (age 86 at the time), who had a bilateral mastectomy several years ago came a little later. She liked going with me to the plastic surgeon! Fortunately, I also work with wonderful colleagues that are good cooks and kept us well fed. We've lived in the same neighborhood for a long time and the neighbors also brought food and kept my spirits up. One good thing, I had over 1100 hours of sick leave when I was diagnosed so was able to take off all the time I needed without worrying about going back to work. It was hard but all-in-all, we got through it okay. The fear that I might not be there for my husband was probably the worst in many ways.

#12 hkewf

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Posted 08 November 2012 - 03:10 PM

Hi, Golden. A friend of mine went through two lumpectomies over the course of four or so months only to find out that she needed to have a mastectomy after all. I am so glad to hear that you had your sisters' support. I have a big sis and I feel like we have a bond that allows us to pick up with each other where we last left off even when we haven't talked in a few weeks or months... she has two small children (in addition to a job and a husband) that pretty much vacuum all of her time. As far as your mother and the plastic surgeon's visit, did you leave something out? Our cat's cardiologist is incredibly easy on the eyes, so I never mind visits with him either! :mrgreen: You sound like you have awesome coworkers and neighbors and that you were very well prepared with lots of sick time. Speaking of your comment regarding fear that you might not be there one day for your husband made me think of a post that I think you may have posted regarding long-term care insurance. If the post wasn't yours, my mistake. It just sounds like you are very keen on keeping ahead of everything that might turn around to be a future issue... I've seen your posts regarding disability and such and it sounds like you've been very proactively managing that process. Anyway, getting back to long-term care, is this something you've done? If so, was there an aha moment when you said that this is something that you need or a lot of small experiences that led you to that decision? Just curious. I'm guessing that I should purchase some sooner than later, if it is something that I am serious about given that I am still really young (will be 37 later this month) and can probably get really super rates.

#13 Golden01

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Posted 08 November 2012 - 07:45 PM

I probably did leave some out about my Mom at the plastic surgeon's office. She enjoyed going with me more than once. He got out the implant samples and let her handle them so she knew what I'd gotten in the surgery. She explained to him that she hadn't didn't have reconstruction after her bilateral mastectomy "because of her age". She was with me when he was adding saline to the tissue expanders and he told her it was "Miracle Grow". I think she went back to small town in Nebraska where she lives and told everyone about my "Miracle Grow". She'd call each week to see if I'd been to the surgeon to to get more!

The long term disability insurance question is looming for me as it goes up as you get older and I've heard there is a big jump by the time you turn 60. I'm 59 now so figure I better look into it. My sister has Parkinson's Disease too. Her doctor told her for several years that she had essential tremor. She and her husband signed up for long term care insurance during that time. She is a nurse and was pretty sure it was Parkinson's.

I wish my employer offered the long term care insurance. I believe it is a benefit for federal employees. I looked into changing jobs and whether my husband would be eligible for the long term care insurance as a dependant but the benefits were limited if they had a diagnosis like Parkinson's. Turned out it was better financially for me to stay where I am.

We've worked at getting my husband approved for disability (small private plan, employer's plan, and SSDI) this year and have getting other legal things wrapped up on the list for yet this year. I have the names of three lawyers that specialize in estate planning for families with special medical needs. We just need to sit down, pick one, and make an appointment. We got a letter this week that the disability carrier for my husband's former employer gives us access to a legal center (sounds like a do-it-yourself deal) for things like wills. We probably will check that out too. My husband has been helping his family find ways to deal with medical expenses for his brother (involves a family farm with a number of owners) and that has made us realize the importance of planning ahead for medical expenses that might be down the road. My husband I will have access to good medical insurance when I retire (for a good price but we'll be able to get it).

Edited by Golden01, 09 November 2012 - 08:55 AM.





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