Some of you have reached out to me and have asked after hubby so I thought I would start a new post. Thank you for asking and for your concern.
It’s been about 5 months since I last checked in. To be honest I needed an escape from seeing how many newbies have had a need for this site, how many people we’ve lost to this dreadful disease and I found that I needed to protect myself from some of the doom and gloom. I hope that this doesn’t come across as me sounding selfish.
At the end of September hubby qualified for Hospice care. We have a CNA (Certified Nurse Assistant) come to the house 3 times a week to give hubby a shave and shower. A nurse stops by once a week to take vitals and monitor hubby’s mood. We went through a severe suicidal ideation phase of depression. Now a social worker stops in about every 6 weeks. Although the person we came to know fairly well has come down with Covid. A new social worker will be assigned to us while the other one recovers. The help has been tremendous, but also at times it is a tad overwhelming.
My husbands voice is very soft now, if at all. He’s lost 15 pounds in six weeks. He spends most of his time sitting in his recliner with his eyes closed while listening to news shows with the volume on full blast. I often don’t know if he’s awake or asleep but I know that he is comfortable. It is pretty incredible how much he understands what is taking place around him even with his eyes closed. He is still on dopamine drugs to help with his mobility but as many folks have mentioned he has reached a tolerance level and we’ve had to experiment with his medical cocktail many times. Long story short, we’re hanging in there but it’s much different now than it was a mere 6 months ago. I feel good that I’ve managed to buy him some time but for how long is anyones guess. We just enjoy each day as best we can.
I’m still sewing whenever possible. I’ll attach a picture of a bear that is wearing a scrubs uniform. It’s for a veterinarian who looks after my friends Cockatoo bird. A few sports related bears are also in the making for the helpers who are looking after hubby, I’m hoping to give them away as appreciation Christmas gifts.
Lastly, our third hummingbird family made it. Two new birdies left their nest at about the time school was supposed to resume. My YouTube film maker had to switch gears and create her classroom online in order to teach her students. Therefore I wasn’t able to record the magical experience in a video like we did with the first two families. Rest assured though, it is still a well documented little hummingbird family. I’ll try to post a picture of them just before they left the nest.
I’m sorry that I’ve been away from the group for so long. I still think about each of you on a daily bases. We’re all doing the best that we can and I admire all of you for being here. A journey that no one deserves.
Xoxo from I SewBears
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SewBears
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So good to see you back. Yes a lot can happen in 5 months. Colin understood everything that was being said to him right up to the end. The speech therapist once told me that lots of partners, carers etc stop talking to the one being cared for if they don’t get an answer. That’s so sad. Thanks for letting us know about the hummingbirds.
It must be even harder caring for someone at this strange time. I hope you stay safe. Take care.
That is so sad, to think that people stop talking. I found that I prattled away more than ever & sometimes asked if I should shut up but a squeeze of the hand would tell me no, keep chattering away. xxx
Silence during meal time is the worst! I just wish for conversation that I know is not possible. Since my husband is a news junky I will read news articles to him when we’re eating. Hubby falls asleep during each meal now and that’s when I switch to playing music. I still expect him to be able to talk to me, even though I know that he can’t. I think that some days are easier on me than others. I’m very tired but wide awake at the same time.
I do feel for you. I used to hate meals, seeing Mum struggling to eat & falling asleep mid mouthful. In the end I got the carers to do most of the meals as I just found it so hard and just did a few tea times, so I could see if there were any changes. It was the one thing I had to step back from to protect myself, There were so many emotions involved from myself & from Mum. Do you have a local talking newspaper? We used to get one and Mum enjoyed listening to it and it gave us some more topics for me to chatter on about. xxx
That made me smile. One day I said to Colin, “ I expect you are thinking for goodness sake stop prattling on,, aren’t you”. He put his thumb up and did his funny little laugh. I then asked him if he was being serious and did he want me to stop. He put his thumb down XxxX
Good to hear from you SewBears, though sorry that you have been having such a tough time. Sometimes we all need to take some time off from things for self preservation, that is not being selfish, that is caring for oneself and we all know that carers have to look after themselves, or else what happens to the person they are caring about...Sending virtual hugs xxx
Sew Bears, it's sounds as if you are doing everything right. Looking after your man, caring for his evey need. More importantly, getting all the help that is required. AND especially important looking after yourself, what ever it takes. This I admire, I know you are laughing, saying if only she knew. Remember, I have been there, so quite capable of reading between the lines. Of course you could do more, but there are only 24 hours in each day. Gosh, think what we could all achieve if we had 48 hours. Even then it wouldn't be enough, for what we think our loved ones need. Mostly what they need is peace, quiet, a place to feel safe and to know they are loved. You are achieving this, so well done.I know this site can feel like doom and gloom at times, from my personal experience, I couldn't have cared for Steve without the support of everyone on here. Of course the professionals did their job, but nobody understood how I was feeling, there was nobody who knew what I was actually going through. I know each illness has its own traumas, but I think PSP has more than most. Please keep popping in, when you are up to it. We all need each other, especially at the moment.
Hi SewBears, so good to hear from you and I understand you having to take time out. You need to look after yourself too so you can give your best to your lovely husband, that is not being selfish, it's being sensible.
My hubby was similar, eyes closed lying in his recliner, but understanding all that was being said and going on around him, which I think is a blessing in some ways as they aren't in a lonely world of their own.
Keep up the sewing when you can and good to know the hummingbirds are doing well.
Lots of love, Nanny857xx
Just want to send a little note... You Are Loved. Will write more later... Sending Hugs... Granni B
Oh, yes, I hear you and share your weariness. I, too, have been away for four months, after posting the news of my husband's death. I have been grateful for this community and proud to be a part of it -- we Band of Brothers-- but found myself worn down by the pain of collective suffering and have needed some time away from it. I think you are doing what you should be doing as your husband bravely resists the advance of the condition. Looking back, I am happy that touching him -- holding hands, hugs, caresses-- was something that was with us to the very end of his life. Prayers for you, for him and for everyone who suffers in this lonely time of pandemic and isolation.
Thanks for writing, SewBears. Never fear seeming selfish for taking whatever steps you need to to care for yourself. Carers so often don't, and you all need to!
Good to hear from you again. Its important to look after yourself. I remember so well how it felt when Chris was at that stage. I certainly found understanding on this site which kept me sane. Lots of love from Jean xx
I can relate and know exactly how you are feeling. I go for long periods where I feel I can’t log in here, because even after three and a half years it affects me when I read about people going through the experiences that I know so well.It is good that you have checked back in, and you know we are here when you need us, keep on doing your very best.
Something else you said rang very true, about although there not being much external activity, that our loved ones are still very much aware of what is going on, and taking in TV sound etc. I know that inside, David was still sharp as a button right up to the end, but just couldn’t express anything.
Hugs for you 🙂
Derek
Escaping is needed at times... especially when struggling with the changing needs of our loved ones. I am hoping your hospice workers are as helpful as mom's angels. Sending Hugs... Granni B
I'm so happy to hear from you. I've been away for some time as well. It was Sandy's one-year anniversary for his new life on the 16th.
I love hearing that your hubby is in the recliner, with his eyes closed (even with the news on full blast). You say he's comfortable. When my hubby was comfortable, even though in the recliner or in bed, it felt good, and made me feel comfortable.
Enjoy every day while you can, love him up whenever you walk by him, and try to take care of yourself. If it's helpful, please check in on the site. My heart is with you.
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