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Topic Going to CA without my husband Go to previous topic Go to next topic Go to higher level

By Maddie52 On 2013.10.11 14:19
First I want to say how much this forum helps me. Everyone's posts and concern for each other is so uplifting AND encouraging. Thank you all.

I only posted one other time so briefly I will tell you about my husband. He is 65 and has had parkinsons for 19 years. He has cognitive issues and has more parkinsons issues such as stiffness, slowness of movement and freezing episodes rather than tremor. He is a wonderful person and has handled this illness with such dignity and has always tried to maintain his positive attitude. Obviously, after 19 years this is getting more difficult. He also suffered a cardiac arrest 4 years ago and underwent a quintuple by pass.

I am planning to visit my sister in California next week ( we live in colorado) and am starting to feel unsure about leaving him. I will be gone 4 nights ( Thurs thru Sun) I have arranged for our adult sons (all married) to stay the nights with him while I am gone. I have arranged for others ( his sisters and a CNA) to stay with him during the days boys are working and not available. I have written out detailed instructions and will have all medication arranged by days and times, etc. My husband wants me to go and see my sister and I do need a break but I worry that he will be nervous and uncomfortable while I am gone. He needs help going to the bathroom during the night and at other times and I don't want him to feel embarrassed. I haven't pinned down the boys as to their schedules with their dad and that too makes me uneasy. I know they won't let me down but it is still making me nervous. When they stay him him or take him out for short periods they usually say they don't understand how I can deal with all this 24/7. Don't get me wrong they are wonderful men and truly love their dad.

Should I just not go??? I'm worried that that might upset my husband too. Not to mention my sister. Does anyone have any thoughts or suggestions for me to make this ago more smoothly. I would really appreciate your input.

Thank you all in advance.


By carman96 On 2013.10.11 18:27
Maddie, I totally understand your reluctance to leave. I have never left my husband for more than a few hours and not overnight. I also am worried about him being embarrassed about the whole bathroom thing. He has to wear depends at night but has trouble changing them himself when he gets up to go.
That being said, go and enjoy yourself! It's only 4 nights and sounds like you have made all the arrangements you can. I am hoping that someday I will be able to get a break for a few nights. You are lucky you have grown sons that are close enough to help!!
Good luck to you, and let us know how it goes. Have fun!

By jcoff012 On 2013.10.11 19:19
I say go, too...this is not from my experiences with my husband, as he is still very able to take care of himself, but rather from my BIL's experiences with my MIL. After my FIL died, he was the sole caregiver for her, unless I visited...he became overly stressed and full of anxiety because he hadn't had "breaks"...we would talk for hours at night, since he needed to vent, etc...

It sounds like you have done all you can to make sure he will be happy and under good care. My only suggestions would be to let his doctor know, in case of an emergency, and have a car "kit" as our local PD group is a zippered bag with his name, age, date of birth, address and a list of his medications in also has a one day supply of currents meds, along with prescription numbers and doctor also carries a card that says, in large fonts: "I have Parkinson's. Please call my doctor at this number: ___________ and make sure I stay on my meds schedule."

Hope this helps...tell everyone it is in the car or somewhere you know they will be able to take it with them.

Please go enjoy yourself. I won't tell you not to worry, because you will...but, it sounds to me like you have planned very deserve a break...take it.

Hugs and please come back and let us know how much fun you had and that you are rested. Jane

By Maddie52 On 2013.10.12 16:32
Thanks so much for your responses. They have made me feel better about going. I really like the "car kit" idea. It makes so much sense to have everything in one place. Will work on that one before I leave.

Hope you have a pleasent and stressless weekend!

By Mary556 On 2013.10.12 21:27
Maddie, I hope your visit with your sister will be restful and happy. It's only natural to have some temporary anxiety before you are ready to go. You have carefully provided for your husband's well-being while you are away. Surely he will miss you and be happy for your return, but this may turn into a sort of mini-vacation for him as well, having some quality time to visit with your sons individually.

Here's one more idea: We have a brass bell that stays within reach of my PwP mother when I am not in the same room. It is loud enough to wake me from sleep if Mom finds it necessary to call during the night.

You probably already have this: a list of doctors phone numbers, your cell number, your sister's number, your pharmacy, a close neighbor, other family members.... it's probably best to post such a master list on a wall in a central location rather than leaving it on a table or somewhere that it could be moved or misplaced. This may seem odd, but for the CNA or someone who may not be familiar with your home, put your own address and phone number at the top of the list.
Once when my family was on vacation in another state, my grandfather fell down the stairs. (He turned out to be fine.) Calling for an ambulance, I did not know our physical address or phone number to be able to tell someone how to find us. (Luckily I remembered the names of Uncle Bob's elderly parents whose home it used to be; right away the dispatcher knew who they were and knew our location... whew!) Chances are slim to none that anyone will ever need to use your emergency numbers, but if you tend to worry, you will rest easier knowing they are ready.

It is always good to have a first aid kit, flashlights, batteries, transistor radio, emergency blankets and power outage supplies in a place where they are easily accessible.

You are already well-prepared, Maddie. Try not to worry. You are doing everything humanly possible. I'm sure your husband must be very grateful for your care! Hoping you both have a great week ahead.

By jcoff012 On 2013.10.12 22:12
Mary, what outstanding ideas for the master list. I am going to borrow them! Again, Maddie, have a good time. Aloha from us! Talk to you when we return! Jane

By Mary556 On 2013.10.13 08:24
Aloha, Jane! Hoping you and your husband have a wonderful week as well!

By parkinit On 2013.10.13 23:00
Maddie! Enjoy yourself on your trip. DO NOT CANCEL! :)

I take two trips a year. One quick weekend trip to visit a friend and another to visit my daughter. We deserve some time off. It does require lots of planning, etc.

PEG your sons down, now, though, because I had commitments from my spouse's daughters and they both bowed out a few weeks before the trip when I pushed for a specific time they could help out. I don't rely on them anymore and plan without taking them into consideration. They can visit while others are here, but they are not to be relied on to be caregivers.

I used a mixture of respite time, hired CNAs, and existing nighttime caregivers. I put everyone's phone numbers in the book, so they would have the next person's number if they were late for their shift, etc., they could call them directly. I also planned out all meals and left specific instructions on what was available to eat, when pills were due, etc. It's a lot of planning, but well worth it!

By Maddie52 On 2013.10.24 14:14
Hello everyone,

I am back from my trip to California and everything went very WELL. Our sons did a great job of caring for thier Dad and thier Dad was very cooperative. He called me numerous times each day but just to say hi and tell me he was fine. He is glad to have me back home and into his normal routine and I think if I do take another trip next year he will be less anxious.

Thank you for all your great suggestions. They were all put to use.

Hope all is well with you all and Jane hope you had a great trip to Hawaii.


By carman96 On 2013.10.25 22:18
Glad it went well!

By jcoff012 On 2013.10.28 11:48
We did, home last night...well, at 1 this morning (it is 8:30 AM)...GLAD you went and all is well...more soon. Jane

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