Not sure when I posted last, but Mom's progression has continuously gone downhill. At first I wasn't sure I was making the right decision, but I know I am now. She needs a lot of help that I can't provide for her here and although I know this is the next step (we both know) it's still so emotional. She is heading to her new, and mostly likely, final residence today. I am so happy with the location and the quality, but as I sit here I find that I have newfound worries. They say they can handle everything that's coming her way, but I'm so scared they aren't prepared for how fast it's happening. I keep thinking, is someone really going to be there to help her to the bathroom? Get her up and clothed? Is she going to be laying there most of the time without much interaction? And I say that because I know she's getting closer and closer to becoming bedridden even though her mind is still around. There are days where she's really not Mom and it's both scary and heartbreaking, but then the days that she is around I wonder if they will be watching her just like I have for the last 9 months.
It's a constant conflict in my head and in my heart. I think I also realize that as much as I wanted to convince myself that she could get better, the reality of this next phase is hitting pretty hard. How do you release control to other people (who you know are qualified and professionals) of your own parent? Especially when they have a rare thing like CBD...?
Again, I know this is the right thing to do, it's just been emotional for us all. And when my own mom looks at me in the eyes with tears running down her face, it's hard for me to keep myself together, because she feels so alone in this as she declines. To hear her say that she is scared and there is nothing I can do but hold her, what kind of sick joke is this? The whole thing sucks. I know if she didn't have to deal with this she would still be active, travelling, happy. And now she's only sad, scared and wanting the end to come.
Sorry for all the sappy stuff... I do have family/friends here that support my mom and I, but they never really "get it". It's hard to not explode on someone when you tell them your mom is moving (and why she's moving) and they say "that's awesome! now you'll have more time to be with your friends!"
No one really gets it.
I just want to say that I am thankful for this space to clear my head, get information and vent when I need to. This community... we are all strong people, as are our loved ones, and no matter what comes next I am grateful for this outlet.
-A
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ARutzen
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Hi, so sorry to hear of your plight, I have been going through something similar. My mother was diagnosed with PSP 2 years ago and as she was struggling to cope, she moved in with us. Unfortunately, last summer her mobility deteriorated but we managed for as long as we could. Then, in January of this year she developed a DVT and was admitted to hospital. Inevitably, the decision was made for me and she was discharged into a local care home. I cannot explain the level of guilt I have felt- as you say, ' nobody gets it'. Although the Care home is one of the better ones and the carer's are very kind to my Mum, it feels like she has been taken over. I also worry that most residents have Dementia, which is managed well
but there seems to be little or no knowledge of PSP, even from GPs or hospital staff. The lockdown situation hasn't helped but prior to that, it was a struggle to get help. I dread to think about what the future holds.
All I can say is thank heavens for this forum and the kind people that contribute a wealth of information and unfortunately personal experiences. X
The guilt thing is the worst because I constantly get the same response "You have nothing to feel guilty about, you've done everything you could" etc. I hate hearing that. I usually just smile and nod, but inside I am screaming. They don't get it, and I know they don't so I can't be angry, but it's getting old. I'm so sorry you feel that too... it's unbearable some days... but I hope (with time) everyone who feels like that can somehow find peace.
I hope everything for you and your Mom continues to go ok with her care team. It is a bit unsettling when you realize there's very little known about their disease. But I just tell them everything I know and everything I've learned (a lot from this forum) to try to educate them as best I can.
Hi A you sound like you have found a wonderful place for your mum so give yourself some credit for that you are very young to have to be going through all of this horrible disease with mum I have recently put my husband into care and yes it’s an awful thing to have to do but I will say the time we spend together is cm special now more than it was when I was his carer 24/7
No one gets it unless they have had to do it and you get everyone saying you did the right thing but the guilt is still there
I visit most days and I’m sure they don’t understand what he has but they do their best and I am checking a lot that he has what he needs don’t be afraid to question things if you’re not sure ? and just try to enjoy being a daughter and do the nice things together as long as you can I think you will make better and more special memories than when you were a carer 🤔
Thank you for your response, you are right I will ask questions and make sure that I have some sense of how they can help. I'm glad you can go see your husband a lot, that is a great thing even though it's not the same as it was. Best of luck to you!
So so lovely to talk to your mum .. good luck with the move . I think when she settles in with all her stuff in her right place she will be happier … xxx
You made mom’s day today! She has called so many people and is so excited to tell them about you. Thank you so much for calling. It really made a big difference ❤️🙂
Yes I hope you two can keep up with one another. She was so happy to have the ability to speak to someone who knew exactly how she felt. I think that's been the hardest part, none of us know how it is for the person carrying it. Truly feel like this site is a godsend because somehow it connected you two and it's exactly what she needed 🙂
You aren't giving anyone control over your Mom. Your using resources to give your Mom the best care possible. I'm sure she knows you've done everything you could for her but it's gotten to the point it's beyond what you can do. But frequently visiting or calling for updates let's the staff know you will be overseeing the care of your Mom. It's the toughest decision people have to make for there loved ones. And you deserve to be at peace with your decision that you made because of the love for your Mom. I pray the move goes smoothly and gives your Mom a peace of mind if something goes wrong help is right there for her. Blessings to you and your family!
It’s a hard and deeply emotional day when you make that move. Some people get it, (like us here) but it would be nicer if it was someone in your immediate circle. You’ll process it all in time - but that day looking into your loved ones face is definitely the hardest.
I empathise with everything you say , it's very hard having someone you love with PSP or CBD & slowly watch them decline & become a shadow of their former self..My husband has been ill for 7 years initially told he had Parkinson's disease & 3 years ago they thought PSP? He went into a home two years ago as safety was a big issue along with other behaviours. I still feel guilty and he hasn't spoken for a long time so it's really hard when visiting & sad to watch the person you love deterioate and you can do nothing about it?? He is here but not here!! like he is locked inside his body. I see him twice a week but it's very hard. Take care & I hope your mom settles well & gets good care. xx
I so agree with the responses from carers in similar situations. I too struggled with a decision to place my husband in a Nursing home after a particularly bad fall and three months in hospital. I have felt guilty ,so often ,reading comments from those who have kept their relatives at home so it’s been reassuring seeing the responses to your message from carers who decided on the care home route.I visited my husband every day in the Nursing Home so it was wonderful that I could talk or read to him rather than all the essential personal care which became more and more difficult with hoisting etc.
I still feel guilty and always will. It’s deeply embedded somewhere. But some days and perhaps over time there will be a slightly kinder perspective. And of course for all of us why did this dreadful illness have to attack someone we love.
I feel like so many people are misdiagnosed and even though we all know there's nothing (yet) that can help, I feel like if they could be diagnosed earlier maybe they can find something for future generations. I'm so sorry he isn't speaking, I truly can't imagine. Seeing him is a good thing though, even if he can't speak, I'm sure he's happy to see you - hugs!
We will totally keep up . Even tho our symptoms vary now we each know what to look out for and can give each other hints and tips of working our way around the mobility problems . At the very least we can just have a moan lol xx
I know our time difference is 5 hours but if she ever feels alone she can call me .We will make it work … As you know I had to put my mum into a care home just before lockdown , obviously I didn’t know that was going to happen ! She had dreadful anxiety which is actually debilitating her . She phoned me this morning very anxious about how much water she should drink she was quite upset and crying . I got myself up there as it’s only at the top of my street and I got to her window and before I could get my phone out ( as we all know these actions take us CBDERS & PSPERS a bit of time to do ) I saw her laughing and enjoying a joke with one of the carers !! When mum was with me at home she wasn’t very happy so even tho I still get all the tears I’m delighted that mostly and they tell me this that she’s happy all the time now . I don’t take offence at this I just know in the home she has a lot of distractions and people to fuss over her where with me I had lots of people to look after and a full time job . I still feel bad about mum in the home but I have no guilt because I know I did my best and do did you Amanda and everyone on this site . You all deserve medals xxx
Yes I think she understand the time difference now so I've encouraged her to give you a call if she feels like she needs to talk. I'm glad to hear that your Mom was feeling ok once you got there. I thin we, as caregivers and daughters, want our mothers to be happy just like they wanted for us. Mom has had a lot of visitors and things to do and I hope she makes more friends there. She likes to remind me that she's the youngest one there, but I try to tell her it's ok. It's unfair, but it's better to look and see how many visitors she has where I see some of the residents don't see many people from outside... the guilt will take some time to get over, even as I sit here I feel it, but I know she's where she needs to be. 🥰
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