I think it's been a couple of months since I have been on this site. Sandy has been gone 9.5 months now. It's quite a journey learning to live without him. I'm doing better than I had expected. Of course, Covid on top of everything just muddies the waters. Who knows what the feelings would be without this. I think taking care of my hubby, then losing him, toughened me up for everything else.
I think I've gotten through all the paperwork, and I've found homes for most of the medical equipment. I'm back to exercise, even went hiking yesterday and am thankful to learn that my strength is renewed, or sort of. Did an eight mile hike, expecting to do a 12 miler in a couple of weeks. Trying to keep my head up and not think too hard about the future. I now take part in a Zoom grief group, which is helpful. And for those of you who had Hospice in the U.S., they provide counseling (over the phone) for a time. I've been taking advantage of monthly phone calls with their grief counselor and she's been very helpful.
I even rearranged some furniture and made arrangements to have the window seat recovered, along with some pillows and a new rug. The living room had kind of an unpleasant arrangement and I couldn't have a rug - both due to the wheelchair. It just dawned on me a couple of weeks ago that the house doesn't have to accommodate an wheelchair any longer. I think it's kind of a breakthrough, a corner turned. Many more corners to go, however.
I miss my sweetheart so much but glad he checked out before all the calamity hit. I just wish I could touch his face, knowing exactly how it feels to run my hand across his cheek.
Tuning in here made me realize how much I miss reading your posts. I hope you all (old friends and new) are doing well...as good as can be expected.
Blessings, Joy
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journeyofjoy
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Oh Joy, it's so good to hear from you. How ironic. John passed away exactly a month ago today. You would think after all the years, knowing that the end was inevitable, that getting back on your feet would be so hard. I am struggling - somedays the pain is so bad. I do know that the it will get better, just not sure when. The tears come at the darndest times. I am so happy to hear that you have begun to see a light at the end of the tunnel. It gives me hope.
I have begun going to a grief support group as well, but I mainly just sit and listen. Covid of course does not help.
Thank you for checking in. Keep turning those corners!
I am so sorry to hear about your losing John. Even knowing that this disease will take them doesn't prepare us for losing them. One month is so soon. Just rest, I'm sure you need it. Things will get better. And yes, the tears come at the darndest times. The triggers are not what we would expect. Let them come. Tears are healing.
I'm glad you have a grief group and you do not have to share. Just listening is okay. I went through a 13 week grief program called "GriefShare" and I am going through it again. I feel like I barely scratched the surface the first time around, probably only half listened. And now I'm ready to dig in a bit more. I think there are many layers to this, that will go on a very long time. Try to find some things, however, small, that bring you enjoyment. Take care.
Joy, what a lovely upbeat post. Glad you are beginning to discover life again. Don't worry, those that have been on the same journey can read between the lines and know how hard it has been to reach the place you are now in. Please live in the moment and enjoy.
I hope you are doing well. "Live in the moment and enjoy" is good. I find that there are not "bad" days, just bad moments. When Sandy was still here and the caregiving was so hard, I remember someone on this post saying "this is just a bad day, not a bad life."
I miss caring for him and am so thankful that I was able to do it. Not everyone has that option.
Love to you, Joy
Grief takes time. It never really goes away. The pain is a bit less every year.
I had the same thought about things could be rearranged in the house. Slowly they are.
It will be a year on December 9th since I lost my hubby Gerald. I think I need some of your inspiration. It has been a trying time. Keep up the postitive attitude! I'll try too! Jeri
It is such a trying time. It'll be a year for me on December 16. Christmas will take on a whole different feeling now. I have a baby granddaughter so am thankful that she'll bring a child's excitement to Christmas once she's a little older. She is such a gift, just at the right time.
Yes, try to find a few things that you enjoy. I find that doing things that my husband and I did not do together helps.
I too have just passed the nine month anniversary. Such strange times learning to live alone and cope with Covid. I had just started to socialise and do things when we went into lockdown and I seemed to go into hibernation. I have never been so tired and it took a long time to get through this.
But, last month I had the spare room which Chris used refurbished and new carpet and bed installed. I have now commissioned works to totally revamp the lounge, new curtains and upholstery, a new fireplace, just the carpet to choose. Hopefully this will be all done by Christmas, the first anniversary of Chris' death.
Christmas is however another quandary, my family live 150 miles away in different directions and if current restricions are not relaxed, I don't see how I will see them. But, I will cope.
I'm so glad to hear from you and good to know you are doing well. Interesting how we've started to make changes in the home. I'm glad that you are making some pleasant changes for yourself. For quite a while, I had no interest in my home, did the bare minimum, and really didn't see a purpose in making anything nice...when it's just me. Even though I enjoy good healthy food, I just ate whatever was in the house, even if it was something I didn't like. Now I feel more inspired. I would be even more so if I could have company. Hard to get motivated when nobody is here to appreciate it.
Holidays are hard. I'm sorry you're far from family and this covid makes everything more difficult. With the holidays and birthdays, I just try to pretend it's not happening and get through the day. I dreaded my birthday and Sandy's as they are six days apart and we always celebrated them together. I think the anticipation was much worse than the actual days.
You take care too. We'll keep on keeping on. Our husbands would want us to live good lives without them. That I know for sure. Joy
What a lovely post ... the future is both scary and a little exciting for me . This roller coaster of unwell weeks when we are advised to plan a funeral followed by days of revival ( comparative) Is so hard to understand and deal with . Is each new day a blessing for my husband or a nightmare ? He feels so poorly but is trying to fight this illness . How will I feel when he does eventually die? I honestly don’t know . Will I sell our house and move somewhere smaller and if so where ? I am trying to take each day as it comes but I can’t help thinking about my future . This illness takes its toll on all of us , exhausting us emotionally and physically ...
Reading your post I could almost taste the slow releasing of the constraints that were necessary during your husbands illness ... I manoeuvre around hoists, large and small wheelchairs, recliner chair , all of which are necessary and helpful but which my husband hates . They will go ,but will I miss them , strange as that seems ? That’s why I wonder if a different house , a fresh start would be better for me .
I wish you happiness for your future and I apologise for my somewhat self indulgent rant .
Sunset, your post is equally positive as Joy's. You know what is looming, of course you don't want it to happen, but you know this nightmare will end one day. We have all felt like this, it's part of the pre greiving stage. The future is very frightening, lonely and yes, scary. Although you are right to feel excited, it is a new life, not one you want, equally, one you have no choice but to embrace. It is the only way forward.
Sending big hug, much love and strength to help you in this part of the journey.
You should never worry about posting your feelings. It's the honesty on this site that makes it so valuable to others who are going thru the same experiences. Thank you for your honesty. I think it's help like this that helped me get thru my husband's death as well as I have.
Please don't apologize for anything. I like your post. When I was caring for my husband, I couldn't see a future...other than caregiving...until toward the end. Then, I started to envision a future - what would I do, would I move, travel, etc? I now have freedom (other than covid) to do what I want. I didn't want this kind of freedom, and now don't have any ideas. I know they will come. The first thing, and only thing I knew for certain was that I was supposed to rest, to recuperate. I am thankful that I have regained my good health but a lot of rest and down time was needed. I have to say that Covid was a gift to me for the first few months. It slowed me down and allowed me lots of quiet reflective time, and rest.
We had just moved to a new home 10.5 months before Sandy passed. We remodeled a home to suit his wheelchair, thinking he may have a few years. Even though he wasn't here long, I'm glad we did it. Otherwise he would have been in a nursing facility.
Yes, strange as it seems, the medical equipment, the catheters, all the things needed to care for him are part of the caregiving, and loving your husband. It took me several months to even address getting rid of them. There was an emotional attachment because it represented the last couple of years. I so missed caring for him. I would get into the wheelchair van and talk to him as if he was sitting in the back, like he used to. It helps, pretending sometimes.
Enjoy every day with your husband. Sometimes it's hard, I know. Say everything you want to say, and give lots of hugs, both for him and yourself. And, of course, take care of yourself. Everyone says that, I know - and it's almost impossible sometimes - but give it a good try.
I’m going through similar thoughts as you are Sunsetboulevard. I came to peace when I decided to stay in our house. A huge weight seemed to lift from my shoulders when I realized that there’s no need to make any rash decisions. In the meantime, waiting for the inevitable, I have completed minor renovations to a couple of rooms to make the place cozier for myself. It’s good for resale value as well and maybe in 3 or 4 years I could decide that I’m ready to move on. I figure that I might as well enjoy our home that we’ve shared together for so long. Short little trips are in my future but I’ll always have this home to come back too. I’m not sure why the burden that I was carrying was so heavy, but once I made up my mind to stay put, I can feel that it’s the right scenario for me. Fear of the unknown is what’s so scary but we are strong and we will persevere.
Thankyou sewbears for your reply . At the moment I’m sitting by my husbands bedside as he copes with another crisis . His breathing was very rapid and congested so the district nurses gave him an injection to dry up the mucus in his throat and upper respiratory tract , which has eased him wonderfully . I can’t tell if he’s aware of anything as he’s not responding . I’m just glad he’s calmer .
Others also tell me to bide my time and the answer of where to live , or whether to stay will become clearer.
I admire your fortitude in renovating rooms... I have no interest in even decorating which the house badly needs .
I too hope that I can make short trips in the future, to my sister in the north east , to my daughter down south , to a close friend in London ( and maybe even to her house in Portugal ), all of which are dependent on this awful coronavirus going away .
Honestly, for me, this site is a life line. The people all understand what a real bad day is (and respects each other).
“One day at a time”. I know I’m running from my ex to my mom who had a stroke (and my ex is the one telling me to stay with my mom- he’s such a true gentleman).
Hello Joy. I remember reading your posts, and I'm glad to hear you are putting life back together. I am only exactly 5 weeks from Steve's passing. As much as we aIl know the inevitable conclusion to our journeys, the shock of our loved one's passing is almost too much to bear. I miss Steve so very much. Our house is small and still I find myself rattling about. Maybe I need to look into a grief support group.
I'm so sorry for your loss. And I agree, it's a shock, even when you know it's coming. Be easy on yourself. It's very soon for you. I started a grief support group six months after Sandy passed. There is no time frame. Every person is unique in dealing with grief. And, with covid, it just makes everything more complicated. But the quarantine for the first few months, was a real gift to me. Lots of quiet time and it slowed my life down, which I needed.
Rest, eat well, get outside. Stay in contact with family and friends, even if remotely. Take care. Joy
What a lovely photo. It is 8,5 months since I lost John and yes it is very hard particularly when almost all your friends are still couples. Pleased to see you are getting out and doing things around the house. It is really the only way to go. This Covid has not helped life but very one in same position. Xx
I am so sorry about your loss. We are on the same timeline. My heart aches a bit when I see couples. I want to go up to them and tell them to cherish each other and appreciate every moment they have together. And I love seeing older couples who have had many years together. We had 37 years of marriage. I wanted more but am grateful for what we did have.
My mom passed in February from PSP and I still find every day difficult at times. In some ways it may be a blessing she passed before the Covid craziness hit full bore, and we are thankful we were able to have a celebration of life for her before the lockdowns. What a long strange trip it's been from her diagnosis, through her care-giving and into the Covid strangeness...it's been a couple of years since any semblance of normalcy, but I guess now it's about adjusting to a new normal. I followed your journey here and was happy to read you are doing well...blessings!
I agree. For most of us, the last few years haven't had any semblance of normalcy. Caregiving, diagnosis, and then losing our loved ones...and then Covid and isolation. I think I was better able to withstand the whole Covid mess because I had been through such a difficult experience already. We will get back to some state of a new normal at some point.
I am so sorry about the loss of your mom. It's just so hard. We don't want to live in a world without our mothers. I can tell you it gets easier over time. I lost my mom 11 years ago.
I agree that we are blessed to have had our celebrations. We had a lovely day for my husband's memorial service and celebration. My heart breaks for those who can't do that right now. Take care.
I’m so pleased to hear you have turned a couple of corners. It is a gradual thing, but they do happen. It has been three years just over for me since I lost my partner to PSP, and it wasn’t until I read your post that I realised I could get my living room rug back down from the loft 😂
Like you, I removed it to make the living room wheelchair friendly!
Keep going, the walking will be doing you the world of good!
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Home after 5days and a joke 
PSP onselt after a stroke
It will run it's course
