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Topic Personal experience with help? Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2016.07.30 02:01
I feel like we are getting to the point where I am going to need help. Not right away, as my husband is still mobile, but it is in our future unless some treatment or breakthrough or something comes along that is better than what we currently have.

He won't exercise and after reading some recent posts here about how nagging him to exercise just causes stress for him and me both, am going to let that go. I'm not happy about that, but my years of nagging him to exercise have been futile anyway, so I have to accept it and make the best of things. I'm planning on selling the weight set he wanted but never used, the many Parkinson's and Tai Chi DVDs I bought him that he would never watch, and the pricey programmable elliptical machine that has needlessly been taking up too much of the precious space in our small house for too long. As I accept that he is simply not going to use these things, the reality is hitting me that we really are declining, we really are losing function, and the day is really coming when we will need more help than I am physically able to provide.

As I start to prepare for this new phase of our life, I am hoping those of you who are ahead of me could share your experiences in hiring help. Some specific questions I have are:

What did you look for in a helper, both in terms of what you wanted and what you wished to avoid?

How did you screen people?

How did you find the person you ended up hiring?

How did you handle privacy issues? It scares me to think someone will be coming into our home, where we keep our tax returns, medical records, etc. We have been stolen from before by trusted individuals, so I am particularly nervous about this aspect of hiring help.

Did you give them a key to your house?

How did you decide how much time/care your PWP needed?

If you have used a caregiver for overnight(s) stays, are there any tips you have for that situation?

It would also be helpful to know what things you wished you had known when you hired help, sort of the things you learned after the fact, the hard way.

Thanks, all. I never really believed until now that we would be facing this. When my husband was diagnosed I was told "This is a great time to have PD because there is so much research being done and a cure is right around the corner." That was over ten years ago:(

By exhausted wife On 2016.07.30 08:27
At first I hired an individual recommended by friends. She began well, but soon became a "friend" rather than an employee. Yes, they are employees, for whom you need workers comp, social security and income tax payments as the employer. After a decline in service (she left my darling alone and he fell), I went to a reputable agency. Yes, more expensive, but the boundaries are clear.

I work full time (insurance). The caregiver is a doll. Her only job is to watch my husband. And make sure he has lunch and his pills. If she is sick or has a family emergency, and I cannot cover, the agency sends a replacement.

All our personal items and jewelry are locked. They always have been. You can get locks for any drawer of closet on line. And although I trust the aide, I do not trust everyone she knows, so no key or access when we are not home.

Unless you have an aide around the clock (we don't), you will still get tired. But the aide during the day gives me real peace of mind.

By bksquared On 2016.08.11 17:40
After feeling terribly overwhelmed and suicidal, I finally gave in and hired help. My life and survival cannot be forfeited for money to be spent protecting me and him. My husband is mobile, but a severe fall risk. It is not if he is going to fall, but how many times per day. He also chokes on food or drink... not everyday, but Mr. Heimlich and I are well acquainted. At first I went to an agency, but they wanted a strict number of hours. AND - when I asked if they would drive him to appointments, meetings, etc. the answer was no. My neighbors used an online site ( to find their nannies. I placed an ad for a male companion that detailed what chores and responsibilities would be expected. If you get responses you need to pay to see your respondents. I did not want a home health aide, but a companion and personal assistant as well as some light housekeeping and cooking help. I did not do background check, but you can. I did ask to see a license for DWI or points since they would be driving. There is no privacy if you hire help, but if you have a housekeeper or cleaning service, plumber or electrician work at your house you already know that. So you to put things away that you do not want to be shared. Also keep your pocketbook and his wallet stashed away so credit card numbers are not vulnerable. I chose the hours based on my need for relief, so we have help 9-3 on Tues, Thurs, Fridays. The fellow we hired also had flexibility with hours as he is a retired postal worker. We asked up front about availability. So when I need to go out at night the hours can be adjusted to 1 - 7 or later. We have become friendly over time, but he is not a friend. The line has been drawn and is maintained. He is my husband's friend and companion but I am his employer. The door is left open, we did not give him a key. I can not tell you the difference it has made in my life. Instead of feeling drained and resentful, I have stability and energy to cope with each PD challenge. This is not an easy disease, and we can not expect ourselves to do everything. It is unrealistic - so get help sooner than later. When you really need it, you don't want to be interviewing.

By ljharper62 On 2016.08.12 17:08
BK, thank you for your post. We've been trying to get someone in and after one person cancelled out on us last minute we were going to try to go through an agency if we could get coverage under the VA for aid and attendance. Unfortunately we would have to use them for far more hours than we need right now. We are back to looking at a private party for now. With me still working outside of the home I have to have someone with my husband so I think we will always have someone there in some capacity the rest of our lives.

By Lynnie2 On 2016.08.15 09:59
I have hired a PSW which is a Personal Service Worker. She works for the Alzheimer's Society and they are matched to the clients.
She is so wonderful with my husband and has been coming for 6 hours one day a week. I pay $12 per hour but it's worth it to have a break.
I also take him to a Day Away Program at the Alzheimer's Society in another town. The day starts at 9:30 and ends at 3 p.m. The staff is so good with him too.
At first he wasn't crazy about going, but he is fine with it now.
They call him Cowboy because I took pictures of him riding a horse near Calgary when he went on a trip years ago. He even wears his cowboy hat some
I don't know if they have such a program in your country. I am from Canada, so maybe things are different there.
Anyway, call the Society and see what they say.
My husband also has PD and the dementia started last year which makes things harder for me but with these breaks it helps with my health in a way.
I know it's hard coping so I hope you get some help soon.

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