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 Made big--and sad--decision today! 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Made big--and sad--decision today!
Today I made the decision to leave Derek in the SNF. It has become increasingly clear that his recent decline has made it impossible for me to care for him at home or even with just one caregiver. I pray--and ask for your prayers, as well--that he will receive good care. I shall certainly try to be on top of things to make sure things get done and he has what he needs. He doesn't know he's not home so that is an issue that, blessedly, I don't have to deal with.

I feel sick. Just sick about this. I'm not answering the phone--I've only told my girls because the younger one was going to bring the hospital bed tomorrow so I had to tell her not to. This is by far the worst and most difficult choice I've ever had to make. :cry:

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jan 02, 2011 5:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Made big--and sad--decision today!
I know it's a hard decision, Pat, but I'm sure it's the right one for both you and Derek. Of course, your care management job is not over but simply shifts to managing the facility. And, hopefully, you can focus on quality of life issues.


Sun Jan 02, 2011 6:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
Yes, Robin, QOL is the important thing, for sure.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jan 02, 2011 6:19 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Made big--and sad--decision today!
Have posted on the other site, too. Just want to reiterate our support for you. I am getting closer to making that choice, also. Del has been hme for just a couple of days and we have had several falls already. He is more active here than in the hospital and our hallways are not very wide so he needs to make 90 degree turns which are so difficult. Please, Pat, share with us how this goes for you as well as for Derek. You have my support always. Nan


Sun Jan 02, 2011 7:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
I certainly will keep you all posted. Thank you for your continued support. Of course, I feel like a failure, especially being an RN. I'd like to think it's the best decision for him, not just for me. Time will tell.

The home health agency just down the road is hiring right now so I think I'll submit my resume as soon as I'm emotionally able to face an interview. Right now I'm bursting into tears every few minutes. A job will help pay for this as well as keep my mind occupied. Of course I will also stay on top of things in the SNF. It should be easy to be able to pop in at different times during the day as well as in the evening on my way to and from the office. Of course, maybe no one wants a 65-year-old RN. I haven't worked since 2005 so I'll need some refreshing--that can be done online now.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jan 02, 2011 7:21 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Made big--and sad--decision today!
I think having a job is very important to a caregiver spouse's sanity. I hope that can work out for you.


Sun Jan 02, 2011 7:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
Thank you, Robin. I think a job will not only help pay the bills but it will help keep me sane.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jan 02, 2011 8:17 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Made big--and sad--decision today!
i havent been here long, but from the few posts i have read, i can tell you are NOT a failure... my attorney said to me once, when the time comes .. do not beat yourself up... you can still spend quality time, if you want stay for breakfast, lunch and dinner every day.. and you will have time to regroup, in between.. my heart goes out to you and i hope soon, you will feel comfortable with this difficult choice..

please take care...
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Jan 02, 2011 8:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
Thank you, Cindi! :P

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jan 02, 2011 8:51 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Made big--and sad--decision today!
My thoughts and prayers are with you. Sleep well tonight; Derek is safe. Katie

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Katie (36) daughter of Marcia (70)


Sun Jan 02, 2011 9:37 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Made big--and sad--decision today!
Pat, I was getting misty eyed reading your post, but know we are all with you, and have you in our thoughts and prayers. It sounds like Derek has already adjusted to his new settings, and with time you will adjust to "your" new normal. Like others have said, I think you have made the best decision, this will let your back mend and allow you to spend the quality time with Derek without the physical strain. I think a job might be a good thing, you should be able to work out a schedule that allows time for both you and Derek.

Fondly, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Jan 02, 2011 9:59 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
Thank you Katie & Gerry! It means a lot to me to have your prayers and support.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 03, 2011 12:40 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Made big--and sad--decision today!
Pat, I am so very sorry that you were is a position to have to face this decision. Even though it is the right decision, it has got to be very, very painful. You are not a failure! Being an RN has no doubt given you many skills and attitudes to bring to the loving care you have provided Derek, and to the advocacy role you will continue for him. But, useful as it has been, the RN degree cannot stop the insidious progress of this disease. It is not your fault!

Give yourself some time to grieve this sad loss. When you are ready, move forward with job applications or whatever seems right for this next season in your life, while you continue your loving care for Derek in a different setting.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jan 03, 2011 1:12 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Made big--and sad--decision today!
Thank you, Jeanne. I see that your husband is also quite a bit older than you. When we married, it did occur to me that I might have to care for him in his old age and I was more than willing. But I didn't figure on Lewy. It's been a pretty rough eight years but I'd still rather have him at home if I were able.

Yes, I shall certainly be his advocate. Being an RN, I see things not being done as they should be and often have to look the other way if it's not something I feel will do him harm and it's something he doesn't care about. In some matters, I tactfully bring up the issue, discussing the reasons why perhaps it should be done differently [with the nurse or aide performing the task, not with her supervisor]. So far there seems to be a very good relationship with the staff. I am very, very sympathetic to the plight of the underpaid, overworked, grossly under-appreciated aides and try my best to make their job easier where I am able.

I agree it would be ideal to take some time to adjust to this new situation before applying for a position but I noted a possible opening for a full time RN in the local home health agency only 3/4 miles from our home and about two blocks from my husband's SNF. So I'm thinking of turning in my resume. Maybe I'll wait until the end of January. Oh, boy--more decisions! :|

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 03, 2011 1:42 am
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Made big--and sad--decision today!
Pat, I hope you were able to rest a bit. Today is a new day. My mom is a retired RN and we laugh because she still says "Don't tell them I'm an RN; we make the worst patients." However, even the bits of knowledge she shared with me also helped me be a better advocate. I know I'm physically far from you but I hope to return to you some of the courage and strength granted to me by all of the fabulous people here. "I know of no higher fortitude than stubborness in the face of overwhelming odds." Louis Nizer
Thinking of you, Katie

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Katie (36) daughter of Marcia (70)


Mon Jan 03, 2011 8:50 am
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