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Topic Respite Go to previous topic Go to next topic Go to higher level

By Mary On 2009.07.01 16:35
Would it be selfish of me to take a weekend off here and there caring for my Dad? I have been caring for Dad in my home for a year now with no break in sight. I do not want to hurt Dad's feelings by asking for a break and am totally unsure how to handle this. One night off a month would really revitalize me, I think, and maybe one week off a year. I do not think the other siblings would take him for that time so I'd have to find a place do to the respite. I'd love some input from Al and Bob on this one. How would you feel if your daughter asked off some time from caring for you and wanted to place you out of her home to have this time off. Be honest but not brutal. Thank you, Mary

By WitsEnd On 2009.07.01 16:50
http://www.cancer.org/docroot/ETO/content/Eto_2_5x_What_Is_Hospice_Care.asp

Mary,

You might want to take a look at the above link. It's from the American Cancer Society and it talks about hospice. One of the paragraphs in the article says:

Respite care

While you are in hospice, your family and caregivers may need some time away.. Hospice service may offer them a break through respite care, which is often offered in up to 5-day periods. During this time you will be cared for either in the hospice facility or in beds that are set aside for this in nursing homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get much-needed rest at home while you are cared for in an inpatient setting.

By lostdaughter On 2009.07.01 18:56
Mary,

PLEASE take some time for yourself if there's any way possible. That is in no way selfish & if your dad doesn't understand he'll just have to accept that it's necessary. I know it's not your dad's fault that he has to depend on you so much but it's certainly not YOUR fault. You're sacrificing on a daily basis for him & you deserve some time to recharge your batteries & have something to look forward to. I used to stay at home all the time because my sister wouldn't take any time for herself. I felt guilty that I might be letting her take on more of the load than I was bearing. I still don't get out much but I'm going away for a couple of days this weekend. I know it will help simply not to have the situation in my face for a short time. If my sister decides to take a day or two sometime, I'll be here to cover. If not, I can't force her & I can't feel guilty. Don't feel guilty for having needs of your own, Mary, & don't feel guilty if your dad doesn't understand. I say this with much love & good intentions. Hugs to you!

By LOHENGR1N On 2009.07.01 20:04
Mary, you asked...."I'd love some input from Al and Bob on this one. How would you feel if your daughter asked off some time from caring for you and wanted to place you out of her home to have this time off. Be honest but not brutal. Thank you, Mary" Ok Mary but this is just Me, I'd probably say something like, About time I thought I'd never get a break from having you around all the time. Or take two days, or only a week? Whoopee! Hurray! Take your pick from responses, also I'd be clutching my back and getting up from the floor from a failed cartwheel try. Take care, best of luck and hang in there. Now go take a night off but behave! ;)

By annwood On 2009.07.01 20:21
Hi, Mary

Definitely try to get away. You will be a much better caregiver if you make some time for yourself. You father would probably want you to do that.

Check with your local Hospice and see if he is a candidate. They provide respite care.

By Mary On 2009.07.02 10:31
Thanks everyone! Hugs and blessings to you all, Mary

By WitsEnd On 2009.07.02 11:13
Mary,

If I were you I would ask myself some questions -

1 - If dad were in YOUR shoes--what would he do? Can you think of some examples of things he did earlier in his life on this? Did he help his parents--if so, how much time and resources did he give?

2 - Rewind your thoughts back to a time when your dad was younger and not in the midst of everything right now. What do you think THAT dad would want you to do?

3 - Do you have a healthy balance in your life? (Balance means time with friends, hobbies, free time, family time, etc.--not just 24/7 on one thing or person?)

By Mary On 2009.07.02 14:21
WitsEnd, very good questions! "Healthy balance!" Boy, I haven't had that in a long time, never even thought about how important that is for EVERYONE. It is just that in May I was away for seven hours one day spending time with my daughter. Dad was home with my husband, who is very good to him. Dad cried when I was not home for supper. My other concern is whether it is fair for me to ask Dad to leave what has become his home now too. Thanks, Mary

By bandido1 On 2009.07.02 15:26
Mary: I had to put on my speech recognition equipment to dictate this answer because I don't type fast enough. Here's a list of activities that I insist be a part of my caregivers routine:

Take a walk and least every afternoon. Stop at the local hobby store, supermarket, fingernail salon, and any other place that will relax you.

Each evening, sit down at your laptop and play scrabble with someone else other than me. For me, it's Texas Holdem.

Take the grandchildren to Disneyland. ( just got back)- it is quieter when they're not around.

Arrange for a good friend to stay with me for three weeks later this year and take a cruise to Italy, Greece, Spain, France, etc. Spend as much of the kids inheritance as you see fit. Spend my portion also and enjoy some of the rest of your life before you are fully involved in my care.

Mary, I'd truly recognize you may not have the ability to do even one of the above, but I certainly think you deserve to take some time off and I'm certain your patient will agree. If not, he needs one of my famous lectures which I will I be happy to compose exclusively for his benefit. Bob C

By WitsEnd On 2009.07.02 16:05
Mary,

You need to ask yourself if it was realistic that you should feel bad because he cried because you took a few hours for yourself. Would he have cried when he was younger and disease free if you took some time for yourself after caring for him all week? If the answer is "no" he wouldn't have cried--then it was the disease--not your dad.

Think of your time as a pie. It is only so big and only so many slices for everybody. How many things have you missed out with your daughter or husband or other people because you have been 100% focused on your dad. Was that fair to them? Also, when your world is so narrow with your focus, even small problems seem big. When you are focused outward on a lot of things--then you only have so much time to devote to any one problem. It will cut your stress and worry levels significantly. It doesn't mean you are kicking your dad out on the street or abusing him. It doesn't mean you don't care for him. It just means you have other people--including yourself--that you need to think about too. If you are less stressed and worried, you will be better equipped to deal with your dad's problems and in the long run it will be better for him.

There are private duty nursing services. Usually they require you pay for half a day minimum. Rates vary. There are also volunteer services. You can check with local churches, adult day care centers and the United Way to see if there are any volunteers that can sit for free....and there's always hospice. Some provide nurses or sitters for respite care. You owe it to yourself and the rest of your family to at least ask the questions and know your options.

By Mary On 2009.07.02 16:20
WitsEnd, it is difficult for me to separate Dad from the disease but I am working on that - either way - it is very hard to see your Dad cry. The only other time I saw him cry was when Mom died 10 years ago. I realize I need to spend quality time with my husband and kids but Dad's needs seem to be greater than theirs right now. I am, however, looking into options in my area. Do you think I should put together the options I like and give Dad a choice from there or is it not a good idea to give him a choice. His mind is about 80% now I'd say. Thanks so very much for all of your responses! Mary

By WitsEnd On 2009.07.02 17:01
I know it's hard to see him cry. My dad did the same thing a couple of times--and for no apparent reason--at least not one that he could communicate at the time. Then again he DIDN'T cry when I told him mom had died--and he should have. The important thing is YOU didn't make him cry. You are being way too hard on yourself and you are holding yourself responsible for how he feels and it is going to take its toll on you. You've made sure his every need was handled. You've been there for him. I also know from personal experience that there is something about losing (or being afraid of losing) your last parent that is especially hard. To put things in perspective though...for all you know he may have been thinking about your mom and cried. You said he was at 80%--but you never know what point in time mentally or emotionally he is for that other 20%. It hurts like the rest of this crappy disease does....but it's a pain you can't hold yourself responsible for fixing. Be kind to yourself. You are obviously a good person and you deserve for someone to be good to you too.

You know your dad best. For me I had to juggle what I felt I could share with dad and what I kept to myself and that changed as the disease progressed. I always tried my best to be calm and sound like I was in control and patient (even if I cried for hours later or occasionally had to walk out of the room to get a grip). Aside from--would you like me to bring you something from the store? or do you want me to do xyz for you?--I didn't involve him in decision making once the dementia set it. You wouldn't ask a 10 year old if he wanted to drive the car--you'd make that decision for him.

Since you are having some trouble with the thoughts of sending him to a nursing home or other facility even for a few days, I would gradually work my way into whatever you decide. For instance I would find a sitter to come and I would pop in and out the first day and get him comfortable with the idea of someone else being there. Then I'd take an afternoon off. Then a whole day. If it makes you feel better you can always put in a nanny cam.

It's going to be a roller coaster and before you finish this journey you are going to be a nervous wreck if you don't take some time for you. I think what we maybe need is to get Al & Bob to set up a training program for everybody.....they might be able to get us all whipped into shape in no time and they would keep us grounded and laughing too. How about it fellas?

By Mary On 2009.07.02 17:08
WitsEnd - I wish you were my Dad! Thanks for your support, Mary

By lynn On 2009.07.02 20:29
Mary and all other caregivers- I just read somewhere that often when we think we're feeling guilt, it's really regret instead. I think this is true and it helps me now to think this way.

By bandido1 On 2009.07.03 14:10
Witsend: re training program--good idea. I will suggest it be included as a chapter of a book being contemplated by a group of PWP's in a NeuroTalk.com forum used by some pretty bright people (except for me)who are all Parkinsons advocates. ---kind of a voice of the PD patient group dedicated to finding the cure. Bob C

By LOHENGR1N On 2009.07.03 15:57
Re-training? No Way! Best I can do is suggest adaptation and improvising programs! As We all know or come to find out with Parkinson's just when You think You're got it figured out it changes! Take care, best of luck and hang in there!


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