djs202

My kids, also did not see Lauren as often as I would have liked. His sister started out seeing him once a week but that dropped off over the last 6 months of his life. There are so many other things going on, especially for the kids. I just decided to let it go. Now, one of them (who lives closest) does have some guilt over that but I figure she did the best she could. You and I spent a lot of time and energy supporting our husband's recovery, such as it was. It is hard to let go of that. Eventually I did. After he was in the nursing home for several months I finally decided that I'd rather spend my time in there being with him peacefully rather than trying to cajole him into doing more, being more, trying more. I just wanted his time to be as calm and supportive as possible. I'm not sorry I made that decision, even if the long hours in bed shortened his life. ~~Donna

Sue, I'm glad you've stayed on as your insight still offers support. Now, even more so to me as I wander through these first months of widowhood. Just as every stroke is different, I think every experience of loss is different. There is a difference between becoming a widow after a long illness and becoming one suddenly or after a few months of illness. One is not better or worse (it is all loss!) but the experiences and the things we each deal with are different. The exhaustion of caregiving and the pain of seeing your loved one suffer is now replaced by loneliness and a change in close relationships. You've managed it all and will continue to do so, I'm sure. I think there is a place for here for those of us who have lost our loved one to stroke or its complications. It is a reality for some of us, thankfully not all. So much good work has been done in stroke recovery and encouragement should be the primary focus of this site because recovery happens for so many. But when recovery does not happen, it helps to connect with those who have been through something similar to what we have gone through. You have provided that connection for me just by staying on. ~~Donna

I'm coming on less often these days but do still check in to see how people are. I always want to see how you are doing. I'm glad you're reclaiming life and making spontaneous trips to see family. I just need to say that you didn't fail. You went far beyond what most of us would have been able to do to keep Dan healthy and at home. His condition was too extensive and demanding for you or any one person to manage. Now he is in a place where many people can band together to give him the care he needs. I expect even they find him challenging at times. His care is not perfect--not as good as you would prefer. But it is okay and he is managing better than you might have expected. Letting go of the daily managing is the right thing to do. I understand the guilt. I still feel guilty about so many things. I guess it is also part of caregiving and, in my case, part of dealing with the loss of the one you love. We have to make decisions we'd rather not make and then the what-ifs come into play. When Lauren was in the nursing home, I discovered I did better if I took a day or two off each week from visiting him. He was 1/2 hr away from me so each visit took at least half a day. It was refreshing to wake up once in a while and realize I had a day to myself. I still feel guilty about needing that but, honestly, I think it made my visiting time more helpful and supportive to him. We are human and we just need to recognize that we also have needs that must be met in order for us to function. I'm glad you are taking the steps necessary to help you function well in the world. I wish you all the best as you continue your journey--with Dan and also those times when you are on your own. ~~Donna

Such a long/short journey. After a year and a half in the nursing home, Lauren developed a bowel obstruction and was transferred to the hospital on Monday, June 22. Though we originally planned emergency surgery to correct the obstruction, he began to fail pretty rapidly and we decided to cancel the already highly risky surgery. I became convinced there would be a significant further loss of function even if he survived the surgery and his function was already pretty minimal. He was moved into a hospice house on Wednesday, June 24. We were told it would be 24-48 hrs but it ended up being 10 days. It was exhausting and holy and gentle and every emotion in between. Lauren transitioned in the early morning hours of July 3. I'm sure the sense of loss will continue to ebb and flow but right now I'm just trying to go through the process of planning for the memorial service and other issues that are immediate. Our experience with hospice house was so supportive and caring. We couldn't have asked for a better environment to go through this tough time. The support of this board was so helpful during the time I had Lauren at home. I'm pretty depleted right now so I'll just post this. ~~Donna

Nancy, it's good to hear from you again. I think about you often and am glad to hear that you are beginning to feel a bit better. We think we can handle anything but it turns out, we can't! You have managed far better for far longer than most of us would have in your situation. I'm also glad Dan is in a place where he can be cared for while giving you more rest. This is as it needs to be. Think carefully about bringing him home. It might not be best for him. That has been the hardest part for me. I can't bring Lauren home because he has to have a wheelchair van and they are costly, even if renting. However, I considered doing that over this past Thanksgiving and talked to his nurse. She did not recommend it. Thought it would be harder on him than it would help. I hurt for him being where he is but I know it is necessary for both of us. Sounds like the same is true for you. Keep taking care of yourself and thanks for checking in. ~~Donna

It's interesting that they say you are not friendly enough but then criticize you for talking to people. Sorry you are going through this. Best wishes as you consider your options. ~~Donna

That ministry of presence with others who are in such a significant time of loss and change cannot be underestimated. As you have discovered, many people struggle with how to be a support. You have been on both sides so have a deep understanding of the kinds of responses--or lack of them--that helps the most. I lost a good friend to cancer a couple of years ago. In a conversation with her, late in her life's journey, she said "There are worse things than dying." Since she had been through such a difficult treatment, I knew she considered her life in its current state to be the worse thing. I understood. Your heart is kind and generous. I'm sure you are a real blessing to those you support and love. ~~Donna

I'm so glad you are safe. Scary stuff there. These are the times when you are so grateful for ER's, right? It sounds like everyone, including you, acted perfectly in the situation. Hope you stay heart healthy from here on out! ~~Donna

This has been such a long haul for you both. I know you will both be grateful to be back home. I always found rehab to be almost as stressful as home, if not more, because I wasn't able to be home much either. The lack of appetite has been a stressor for you so it's good the feeding tube will provide the nutrients he needs without all the scary choking and not eating. Sounds like everything is going in the right direction! ~~Donna

It's disappointing that he has to continue with the feeding tube. I remember how important every one of those tests was to us. However, it sounds like you have gotten some great information about what is going on with his swallowing. Choking is so scary and something to avoid for sure. You and I both know how frightening that is. Thankfully, rehab is working well for him and helping him regain function. Take care of yourself in all this--as best you can. ~~Donna

Oh my goodness. I can sense your despair and fear and certainly understand it. These strokes are particularly hard to take when they come to younger people with young children. I, too, have often wondered how one person can endure so much and still live. It sounds like you both are taking things as they come and trying to make the best decision in that moment. There is little we can do but take one step at a time. Listen to your best instincts and do what seems best. None of us has a crystal ball to see into the future so we can only try to make decisions as they present themselves. I do wonder whether you might benefit from speaking with an elder law attorney. My conversation with one was so very helpful. They will help you take a look at your finances with a long term perspective and help you make decisions that will maximize your benefits. They know the state laws around long term care costs and Medicaid eligibility, etc. They can help you with the financial preparation and give you a sense of direction. Preparing to be alone, if and when necessary, is the tougher part. Many of us are on that journey. Perhaps we can lift each other up in the process by sharing it here. You are in my thoughts and prayers. ~~Donna

I am part of Ravelry. I'll look you up.

I love this! I think it's wonderful that you are able to enjoy some of your creative pursuits again. I have loved knitting and did quite a bit of it while Lauren was originally in the hospital after his stroke but I lost the capacity to take on any project once he came home. I am only now beginning to regain the desire and he's been in a nursing home for a year. But you inspire me so---here I go too! ~Donna

That is beautiful. Is it tatting?

Nancy, you continue to be in my prayers. I know you feel broken and that things there are not bearable. You say you have a beautiful home with nothing of value inside. Wrong. You are inside and you are most valuable. I think Dan is still inside and he is valuable too. He just needs more help than you can give and he needs it from someone who is more detached from his behavior than you can be. You have said before that you see nursing home placement as failure (for yourself). There really are times when it's the best thing for the one who needs it. It is such a hard decision and one we never want to make. I can tell you that, for me, it was the right thing to do. I still hate it and wish it could be different. But it isn't different so the only thing I can do is make the best of the situation I'm in. That's what we've all done all along. If there is any chance you could talk to an elder law attorney, I think it would help you sort out the financial concerns and develop a plan for the future. Perhaps you've already done this. This type of attorney knows the laws specific to your state and is aware of possibilities you may not have considered. I'd hate to see you sell your house if you can avoid it. I think you need someone with a clear head to help you develop a survival plan. You are in mourning and are physically ill as well as in emotional turmoil. None of us would be able to think clearly in the midst of all you are dealing with. Please, please, take care of yourself. ~~Donna

Sounds like a new dr is definitely in order. No one should have to put up with that kind of treatment by their physician (or anyone for that matter). I sincerely hope your neuro will be more compassionate and helpful. There are drs who care. We have had some wonderful ones. I sure hope you can locate some where you live. You have every right to expect that. ~~Donna

Thanks for the update, Nancy, as sad as it is to read. I have been thinking about you a lot. It is time, Nancy. I hope you will find the strength to lovingly place Dan in a proper place that can take care of him while you recover. From my experience, this will not be a short term thing. I hope you will think of it as "as long as is needed." It has taken me a year to get through the physical and emotional recovery (mostly physical). As to the guilt, it will be with you. None of us want this for our loved ones but there does come a point when you are not capable of doing alone what it will take multiple layers of people to accomplish in the nursing home. I'm so glad you have people in your court. Get healthy for your children and grandchildren--and YOU! Everyone, including Dan, will be better off for it. All my best wishes are for you as you figure out where to go from here. ~~Donna

Sorry to read of this. I'll sure keep you both in my prayers. Hospitals at Christmas time have become our MO so I can relate to the stress this causes on many levels. Hope he improves quickly and gets back home. Best wishes to you both. ~~Donna

Brilliant!

I'm so sorry to hear of your friend's cancer and your son's marriage breakdown. It's so hard to watch the ones we love go through hard times. I know the support you can provide to your friend and son will be a blessing to them. I loved your comment about unsolicited advice. Well-intentioned, valid, and USELESS! Ha, ha! So very true. Seems to me you've been doing what you need to do when you need to do it. You know best what is needed in your life. I know the way ahead has seemed pretty foggy at times, but you have managed it and done it well. It sounds like this holiday season will be mixed with upheaval again along with the sadness. I also hope you are able to find some joy in the mix. Praying for that. ~~Donna

This is so scary and I am very glad you weren't hurt any more than you were. I hope you heal quickly. I also know about those wicked UTI's! Those darn things seem to take a huge toll on people who are already debilitated. If Lauren had ended up in the position Larry was in, it would have required a 911 call to get him up. No way I could have done that. The fire department came to know us well--even gave me their direct line so I didn't have to call 911 for a pick-up off the floor. In the entire time we raised children, I never called 911 for anything. With Lauren, it became so routine even the neighbors didn't pay much attention! Enjoy your visit with your daughter and have a wonderful Thanksgiving! ~~Donna

Lord knows, you have done your very best to bring about positive change for Dan and for you. I agree with the approach you are taking now. There is no other one. Really, you must save yourself. I know you will always continue to provide Dan with the basic care he will accept. I fought and fought to keep Lauren moving and thinking and trying to recover. He wasn't as angry and uncooperative as Dan has been but the result was the same. Even in the nursing home I tried so hard at first to keep him up and moving. I've given up. I've finally decided that he doesn't need me to spend the later years of his life nagging him. So he spends a lot more time in bed than he should, he doesn't move at all. Hoyer lift gets him in and out of bed. There are consequences. We all know what they are. But I am helpless to alter them. Now, I am at peace with it. Thankfully, most stroke survivors do better than Dan and Lauren have done. Recovery is possible and happens often. Just not for our guys. It stinks but, as you so often say, it is what it is. I think of you often and do want to know how you are. Take care. ~~Donna

What a wonderful, uplifting story! i'm so glad you returned to your dancing days. And yes, you are right that there is no reason to give up what you love. Postpone, perhaps. But never give it completely up. Good message for us all. ~~Donna