Widowed Village

A community of peers created by the Soaring Spirits Loss Foundation

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Long-term illness

For those widowed by cancer AND other illnesses or long term conditions that required caregiving.

We now also have a "Long Term Illness" discussion forum in the PERENNIAL main forum. Questions? Widville@gmail.com

Members: 605
Latest Activity: Sep 20

Group greeters

Dianne in Nevada and Celestia have agreed to greet and coordinate for this group! Thank you, ladies!

Discussion Forum

Looking to Put Together Resources for soon-to-be-widowed

Started by Mozzie. Last reply by NeverWasNorWillBe Sep 17. 28 Replies

I found being the spouse of a terminal person very frustrating.  We were getting care at a prominent hospital, and there were social workers, but I didn't feel like anyone ever gave me useful…Continue

Anyone ever have a sense of peace?

Started by Timetoheal. Last reply by Juls Sep 17. 38 Replies

Has anyone been doing normal chores or random things around the house and had a feeling of calm or peace come over them? As if your loved one is standing there with you or just brushing by you to let…Continue

Grief and release at the same time?

Started by Germaine. Last reply by only1sue Sep 12. 28 Replies

I am aware of two different forces acting from within me.  One is the downward weight of grief. The other is an upward energy that comes from the release from caregiving.  After 16 years of part time…Continue

NY Mag Article "The Day I started Lying to Ruth" by a cancer doctor on losing his wife to cancer

Started by Patience (Diane). Last reply by Patience (Diane) Aug 29. 18 Replies

Has anyone read this article?  It stopped me in my tracks yesterday. http://nymag.com/news/features/cancer-peter-bach-2014-5/Continue

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Comment by only1sue on September 16, 2014 at 10:34pm

Maggie, once my husband Ray started sagging at the knees as well as falling sideways in a chair I knew that it was nursing home time.  He had had seven major strokes and innumerable TIAs and just started having seizures.  I wish I could have kept him home till the end (15 months later) but I knew that one person or even two could not do the lifting etc needed.  So the nursing home was the way to go, expensive and guilt-producing, but the only way.  We can only do things the way we see them at the time.  NO GUILT please. You did your best. As we all did.

Comment by CaseyLea7 on September 16, 2014 at 10:31pm

Maggie,

Do not have regrets about your husband being in the hospital, you did what you thought and believed was best.  You had him cared for by professionals, what better care could you have had?  My husband was on hospice at home and I will say in my experience, it was very difficult and something I have trouble with.  In the end the nurses weren't able to control his pain, it was unsettling and emotionally disturbing.  I say this only to let you know that no way is perfect, ideal, or the better way.  Don't have regrets, you did what you were supposed to do, gave him the best care possible, which is all we can do as a spouse.  

Comment by alwayshopeful (Jocelyn) on September 16, 2014 at 10:19pm

Dear Idaho and Cynthia. Thank you for your kind words as well. Frankly, by now, my husband would have accused me of "wallowing in grief." I'm much better most days, it's just that the anniversary of our last week together in the hospital stirs up so many memories for me. We just enjoyed each other's company, in spite of being on the cancer floor, being stuck in a room, etc. I helped the nurses and they helped me. Once we came home, it was new hospice nurses in and out, people to help me bathe him daily, he hated it. So, I thank you all for all of your kindness and will dusty myself off and put on a happy face again tomorrow.

Comment by alwayshopeful (Jocelyn) on September 16, 2014 at 10:14pm
Oh Maggie. I am so sorry that my post upset you! Brain cancer and what our loved ones had to endure SUCKS. We went thru pretty much everything you and your husband did except the feeding tube. Your hope was not irrational, IMHO. Hope kept us going when not much else could. Taking care of a disabled person is not easy - emotionally or physically. We were blessed - his brother literally moved from FL to PA to help me 24/7. Without him, I could not have had him at home. I am eternally grateful to him. My husband was perfectly healthy before the BC, and he hated all the hubbub of the 2 hospitals we had to go to every time he got sick. We were h.s. sweethearts and married 37 years, and he wanted to be home. It may have been the best for him and for me, but I'm not so sure it was for our kids. They had to see their dad go downhill every day, and we still live in the house he passed in. Not easy for them, still.
Maggie, you did the best you could with the resources you had. PLEASE don't beat yourself up over this. There is nothing about this disease that is nice or pretty. We all do what we can and how we can.
My father had died from ALS 12 years ago, and he was also bedridden, so I learned a lot about that type of care helping my mom with him.
I also was able to take a leave from work, which not everyone can do.
I wish I could give you the biggest and longest hug. Losing your spouse is hard enough. Be kind to yourself, and I'm sorry if my post caused you pain.
Comment by Maggie on September 16, 2014 at 9:12pm
I don't normally post here and Oh, I shouldn't have read these posts, because I now have a BIG CASE OF THE GUILTS. Actually this is something that follows me always-the guilt. My husband too had brain cancer and after surgery, he did rehab for 2 weeks and did really well. He came home to begin chemo and radiation and almost near the end of that, he had a large abdominal bleed due to drug combinations that greatly lowered his platelets. He was in the hospital trying to recover from that, which ultimately he never did. The hospital had done all they could do and gave us a choice of more rehab or going home with rehab there. Since he had done so well before I made the choice to go to rehab. Well after two days, I could see it was a huge mistake. It was not a good place like the first one and he was very unhappy there. So I brought him home on my own against their wishes. After 6 days with home health care twice and twice for rehab, he was getting weaker and weaker. I noticed one morning his abdomen was huge, so I called the hospital and his Dr. and had him readmitted to the hospital. He was there two weeks and they took many liters of fluid from his abdomen. He quit eating and became almost bedridden. I had to fight with his ON and insist on a feeding tube, as he basically quit eating. After two weeks the hospital again felt they had done all they could do. So I had a choice...another rehab/skilled nursing facility or bring him home. I still had hope that if he could just regain his strength and be able to at least get up and over to a potty chair, I could manage alone at home. But he had to begin to eat and gain at least a little strength back. So I opted for the rehab feeling this was his last chance to get better and ultimately come home. I just didn't want to give up on him and us. Well in a short time he quit doing any rehab but he did eat a little and they had removed the feeding tube. I still had some crazy irrational hope. During this time at any point, I could have brought him home. But I didn't. We had no family nearby or that could come and help. I'm not a big person and could have never lifted him if he had fallen. I felt he was in good hands there as this was a good place and I liked the Dr. very much and trusted her. He became completely bedridden and in diapers and it took two people to move him to change the sheets and his diaper. I could have had him home and hired 24/7 care. The timeframe was unknown at that point ...weeks to months. That kind of care is expensive, but I could have had him home. But I didn't. He was there for 6 weeks and the bleeding returned near the end and he was put on morphine. I was there everyday all day. But he died there one night later after I had already gone home. I could have had him home, but I didn't. 14 months now and the guilt sometimes eats me alive. Every time I read where a loved one died at home with their spouse and how glad they are that it was at home, I feel like dying inside. I made the wrong choice and I have to try to live with that the rest of my life. I love my husband dearly and I'm afraid he will never forgive me for this. I'm glad that many of you were able and made the right choice to bring your loved one home. It was a gift to you that I will never have.
Comment by idaho on September 16, 2014 at 8:27pm

jocelyn, my story is very simalar as my husband also had brain cancer - I don't know when itll get better but I know it will. I am glad you had him home with you. our last week in the hospital- I felt like everyone just gave up! I am still living the could've would've should've but Its silly and I know they wouldn't want us to think that! sooo on we go- trying to smile, laugh and move forward cuz that is what they would want! hang on to those good memories and pull em out when you need a smile! hugs to you!

Comment by goingon (Cynthia) on September 16, 2014 at 6:45pm

Dear Jocelyn, only1sue and everyone else ... sorry to not name each of you... we had hospice for 3 days.  I wanted him home; the doc gave him a choice of hospital palliative care, or home hospice and he asked me what would be easier for me; I said I want  you home...

Those last three days were a blessing for him that he went so fast at the end, although he had been going downhill for about 3 weeks, but very fast.  He also was ill for over 30 years with Crohn's Disease.  Does this get easier?  Some times it seems like it does, other times, not so much.  Some days I wonder how people do this.  Go on and on after the one you loved so much is gone.  It will be 4 years in November for me.  Somehow, I just keep going on.  

Comment by alwayshopeful (Jocelyn) on September 16, 2014 at 5:23pm
See, this is why I love this place! So many of you have reached out to understand and comfort me already. Even close friends don't get why I'm struggling this week.
only1sue and CaseyLea. Thank you so much for your kind thoughts. I can usually keep a positive attitude, but for some reason, my mind goes back to that last week in the hospital, which actually was a real blessing for us. He had a private room, and I never left him. He couldn't talk by then, so I gave the docs on rounds at 5 a.m. a summary of what was happening. I will always be so grateful for the amazing care we got in a very well-known Philly hospital.
Grateful for all of you as well!
Comment by only1sue on September 16, 2014 at 5:10pm

Jocelyn, hugs from me too.  Two years for me on Friday.  Just try, as I am, to see the happiness prior to those bad years.  Ray had 22 years of illness all up, lots of time off work etc. There were good times as well as we had family around and managed to keep up with friends. The best times were 1990 from a year after the first stroke and before the bad ones in 1999. From 1999 onwards until his death in 2012 there were many hospitalizations and a lot of heartache and pain. (((warm hugs))) from me too. 

Comment by CaseyLea7 on September 16, 2014 at 5:06pm
Good luck this week. I have trouble thinking about that time in hospice with my husband. Not something anyone should have to go through with their loved one. Hopefully at some point those painful times won't be quite as painful and you'll be able to focus on the good times you had with him. Take care.
 

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