Care giver for parents

[jujuwwhite]

Would love to hear from some of my new friends who can give me some insight on how to continue to be a good daughter by continuing to care for both my disabled parents while still living my own life. I have done this for many, many years with no hesitation and even though I don't regret it, I have now finally found my own life and am having a hard time balancing it all with a full time job too. I KNOW I am not the only person in the world with this problem so I would love some suggestions on how to be 'super woman'.

Thank goodness I have a very special, understanding, and supportive husband or I would have already burned out from exhaustion.

[classicman]

Sorry, no suggestions here yet, just encouragement. Good luck to all of you.

[Clodfobble]

Look into respite care services in your area. It's not a bad thing to hire a professional to take over a few tasks and give yourself a break every once in awhile. www.care.com has every kind of caregiver you can imagine, including special needs professionals, and they do background checks, the whole nine yards. It's a bit pricey to sign up, but once you find someone you like you can work out an agreement between the two of you and cancel the membership again.

[wolf]

I have recently been through what you're dealing with. The hardest part is putting up with the tirades, sometimes, because you can't respond.

I was pushing some serious compassion fatigue for a while. It was especially difficult for me, because my job (which I viewed as an escape from home, at times) is extremely stressful, and involves dealing with seriously mentally ill people who are off their medication.

Respite care is a great idea, but can be expensive. Check in your area to see if there are any TRUSTWORTHY volunteer organizations available to you. A lot also depends on how debilitated your parents are, can they be left alone for any periods of time, and what level of care do they need? Total care, or just someone to clean up a bit and remind them to eat?

Also, do you have a sibling that you can either call on for help, or use as a reality check? (siswolf was the one who recognized that much of momwolf's care was beyond my ability, and that we might have to consider a nursing home ... this was before her final illness, but may have been the one just before that).

[xoxoxoBruce]

$10,600 a month + medications & incidentals.

[Griff]

Can you see if your parents have any old friends who would come in on a regular schedule? Sometimes people only want to be asked. I don't know your parents condition but it could be that someone they know could use their companionship as much as they need other's.

[morethanpretty]

I'm not sure what level of care your parents need, but I know there are adult day care/adult day services. Here is a site with information
http://www.archrespite.org/archfs54.htm

[jujuwwhite]

Thanks, Friends, for all the suggestions but especially for the words of encouragement! Both my parents are in wheelchairs but do some have some mobility as far as transferring back and forth to/from their chairs. They both are in their 'right minds' and can do a lot of their own personal care but do need a lot of assistance with housework, etc.

I guess my biggest problem is that I have ALWAYS been there for my parents and now that I have found my own life it is really taking some adjustment on EVERYONE'S part!

I do have an older brother but due to his poor health, he is no assistance with our parents. There are no other family members for me to turn to and other than my husband, I have no one else. (well that's not true anymore!! I have my cellar buds!)

[capnhowdy]

Juju, we will be fine with them. It takes a lot out of your schedule and I appreciate your heart. God will reward you for your kindness. Your 'rents are lucky to have you. You are lucky to be you. I am lucky to know you.

I wonder sometimes if you didn't have them to care for, would you really be complete. You are a caregiver and we know that. Life has a way to work it's self out. One day, you will look back and be as proud of yourself as I, and all others who know you personally are.

I am behind you all the way (mooshie cooshieness not intended) and never worry about what you need to do interfering with our life. Keep being the person that you are. The world could use a lot more Jujus.

If you were a rainbow I'd love all your colors. I'd be an artist painting pictures of you.

....calls to check on them......

[jujuwwhite]

Originally Posted by capnhowdy

(mooshie cooshieness not intended)

If you were a rainbow I'd love all your colors. I'd be an artist painting pictures of you.

.....

WTF?!! I love you too babe but you really should stop drinking now and go to bed!!! LOL

[chrisinhouston]

I was a full time caretaker for my mother and dad until they both passed away so maybe I can give you some insight. First, some background on my situation as all are different.

My parents lived about 800 miles away from me (my home is in Houston, Texas) in Atlanta, GA and had wanted to live out their lives in their home of 40 years. My mother had Alzheimer's disease in a state of slow progression and my father had been her caretaker for a few years as she lost the ability to do things like cooking or housework or drive a car. I was making monthly trips to see them when my father began to loose his eyesight. At that point my sister, who was single moved in with them to do their errand running, get them to doctors and church and such. Then my mother fell and broke a hip. She got a replacement and was able to learn to walk again but about a year later fell and broke the other one. At this point they did the surgery but she could not learn to walk again and my father's eyesight was all but gone. While my mother was in recovery she came down with several deadly nursing home type infections and we did not expect her to live much longer. When the infections were gone we took her home and got hospice care as she was very weak. But it was more then my sister could handle since my dad was now 99% blind so after discussing it with my wife (who traveled a great deal for work) I moved back to their home to be one of their caretakers. Thanks to our good care and my mother's strong stamina, she survived under hospice care for 2 more years which is pretty unusual. While hospice supplied a nurse aide 3 times a week to bathe her and help out (and a nurse visit once a week), my sister and I were the full-time care givers. Our days started early and ended late and you could be awakened at any time of night with an emergency and we worked 7 days a week. Once every other month or so one of us would get a break, a week or 2 off while the other caregiver ran solo.

When my mother died, it was hard on my dad and he began to go downhill. They had been married for 62 years so he took her death pretty hard. Seven months after she died, he had a major stroke and after a week of hospice care in their home he passed away; he was 92.

So what can I tell you? Don't feel guilty and don't try to do it alone. Having some kind of support is so important. For me it was the support of my wife and some good friends, my kids and others. I even started seeing a therapist and had to take anti-depressants for 2 years. At times I was angry and depressed and even considered my own future as I did not want to end up like this. I can not stress this enough and just the fact that you have asked for help here is a good sign; I made many good friends here while care taking for my parents.

Get plenty of exercise and eat well. Sounds a bit simple but when we care for others we tend to put our needs last and you will need all the strength you can get.

Make decisions as best you can as things transpire. But you may need to start thinking about how much is too much for you to handle. My mother lost the ability to control her bowels and I had to give her suppositories and then clean up everything, just like taking care of a baby. I dressed and undressed her and fed her as she could not do any of this on her own. I had to do things we take for granted like how to wash her hair. I used to wheel her out on the deck by their kitchen in all but the coldest weather and recline the back of her wheel chair and wash her hair with a bucket of warm water, then wheel her back into the kitchen and comb and dry it with a blow dryer. I also had to have her clothes altered so the sleeves and side from the cuff to the hip on each side were cut and fixed with velcro. She could not bend her arms enough to be dressed so I came up with this method. The Hospice team was very impressed!

Are your parents able to maintain their lives on whatever income they have? My parents were, thanks to a life of work they both got good SS payments and also my dad had investments. But in the end, it may have been cheaper for them to have been in a good assisted living home. You and they will have to weigh all of the pros and cons of how their future is to be planned out and keep in mind that things seldom go exactly as you want.

Don't know what else I can say, but I'll keep watching this thread and you can PM me if you want to get in touch in a less public manner for more help or support.

Best of luck and don't ever feel guilt. Everything you are doing now is a sign of your love and devotion to them.

As a side note, I took many pictures of my parents as I documented the final days of their lives. This was a good thing for me, mentally. Here is one of my favorite ones I call, "My Mother's Hands" She used to play the piano and had beautiful hands.

[jujuwwhite]

Thank you, Chris, for sharing your experience. It is very helpful just not feeling so isolated. I guess like everyone in the world, sometimes I forget that others have experienced similar experiences. I am trying to learn to take the advise of others to stop running myself ragged and that seems to be my hardest obstacle to overcome.

I was a full time caregiver to my grandmother and great greatmother who were both suffereing from terminal cancer. I did that for four years but was a lot younger than I am now and lived in the house with them at the time.

Thank God I am discovered a wonderful man...capnhowdy...who has been very, VERY supportive of me and my parents. He encourages me to take time for JUJU and doesn't make me feel guilty at all on the times I have to be away from him to care for them.

I even took the day off today and did NOTHING but relax.

[Pie]

Chris, I think you've posted that picture before. Let me tell you again, it's absolutely lovely. Thank you for sharing it with us.

[jujuwwhite]

Whew, here is the most recent update on my caregiving experience... my parent's water well stopped working and since it was installed almost 60 yrs ago, all the parts were old and out of date. After 2 days of the water man working on it, it was determined they just needed to install a new pump, new pipes, new tank, etc etc etc!!

They ended up installing a submerged pump that has great water pressure but it ended up costing 1600.00!! (ouch!) Of course my parents have ABSOLUTELY no savings due to their house burning down several years ago with no insurance! Anyway, thanks to my wonderful husband, capnhowdy, he called and handled all the repair info and told me not to worry about it. (he and I had to pay for all the repairs) It cut into our savings but we will be fine.

After the well was flowing water again, the hot water heater quit working! (yes, at that point I was ready to scream or cry or both!!!) Again, capn told me to stop worrying and he handled it again. Thank goodness it didn't cost us anything to repair. It simply had to be reset an some fuses had to be replaced.

That's why I haven't been very active in cellar lately. I have just wanted to run away from it all for a little while but there seems to be no escape. Then I get to feeling guilty for feeling that way! OHHHHH it's a vicious cycle!

[capnhowdy]

Now all we need to do is fix the stove and the van and we might be caught up for a while around there LOL