I don't tend to post often as caring and working has taken a toll on me but reading your wonderful words has kept me strong and informed about what light be coming next when medical professionals had no clue - thank you all from the bottom of my heart!!
However things have taken a change for the worse during these difficult times. Whilst it's not covid related I have really struggled to get support as I feel mum is entering the final phase and remains at home with us. Completely understand the why and not complaining in the slightest as our dedicated carers have been a tower of strength but I am feeling stuck. Stuck watching mum ebb away, unable to get away, stuck unable to get additional equipment or support as certain services are considered not essential and stuck with just my thoughts and guesswork about where we are.
The sun is shining and I am so blessed to get to spend more time than ever with mum and I have the most wonderful supportive husband but I just can't stop crying. I don't like to upset anyone and nobidy seems to understand but guess I am just putting it out there in what I feel is a safe space xxx
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elvira4u
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This is the place to vent. You are burnt out. Everyone here understands. No one can care give without a break at some point. If you don’t get a break you will break physically, mentally or both.
This would be hard enough to set up but with the pandemic it becomes more difficult. Do you have an other family member to step in for a week or two?
I expect caring has become really quite intense for you. I'm sorry.
Yes, watching the one we love slowly ebb away is hard. My thing, when my Liz was at home (She's now in a nursing home, was getting up in the morning not knowing whether some other ability, or functioning had been lost i n the night.
There is a lot to cry about. I used to let myself cry, thinking, "This is the pain of loss, embrace it, it's real." By recognising it for what it was it settled and I could move on. Until the next step in the drip drip of loss that is PSP. And, that is the problem with PSP, it's constant small losses adding each to the other.
I hope you can find a way to manage it in way good for yourself. If it helps remember that it is only a deeply wired hormone response. It is not 'you' as it were. Just something our brain does to make us pay attention to what is happening. Can you talk to your husband about these feelings?
Wishing you and your Mum the very best at this difficult time.
Thank you so much for sharing your experience- every day I am watching and waiting and it’s the ‘drip’ that feels so hard - no rest!! I am trying to speak to my husband but he has a lot of work stress at the moment and I am trying not to add to it - he has been incredible to continue supporting us both as it is and need to be there for him too. I appreciate your reassurance this is not the normal me and will be clinging to that!! Xxx
Hi. I am so glad that you feel that this is a 'safe' place to vent your frustration and feelings. We all suffer from this even when things are normal so it must be doubly worse for you right now.
Have you spoken to your Doctor about the crying and how you are feeling? I never thought that I would ever admit that I was depressed but when I finally spoke to my doctor he said that he was surprised I had not spoken to him sooner !
On the positive side how lovely that you have a very supportive husband and that you are being able to spend more time with your Mum. I know it is awful watching someone ebb away but she is ebbing away with you and not apart and that must be precious for her. Does she like music? I would play music a lot when Nigel was ebbing away and it lifted my spirit and it certainly seemed to lift his too.
A big virtual hug for you and please post again if things get on top of you. No one will mind. AliBee xxx
Hi Alibee - yes we have music all the day or ‘day yes to the Dress’ tv show. She doesn’t seem to be able to see it but relaxes as soon as it’s on - she always did love dress shopping!! I think you are right about contacting the doctor. I tried once before but whilst lovely she told me it was natural I was sad due to the position and i didn’t press it - I think I’ll try again! Thank you so much xxx
I hope you feel some relief from having put it out here. That's what we are here for.
Chris has gone but I still remember tbe relentless stress of managing and feeling so exhausted and responsible. This pandemic is a nightmare we could all do without and limits so much. I.hope you are able to organise a breathing space and get some rest. What a blessing to have a supportive husband.
Let us lnow how you are and rant if it helps. Its o.k.. Big virtual hug from Jean xxx
Thank you so much - I cannot tell you all how touched I have been by the response!! We had a couple of rough days since hence the delay but I feel stronger just from having a place to talk - thank you so much!! Xxx
I’m with Alibee on this, I wasn’t tearful but filled with horror and gloom at what was in store for us both. I spoke to the doctor and she suggested low dose medication to help with my mood. I decided, after much deliberation to take her advice and it took the edge off of the anxiety to help me cope. It did the trick but as soon as I lost him I gently weaned myself off of the meds as I didn’t want my emotions stifled. It’s a difficult journey caring for someone suffering from the effects of PSP, especially in these torrid times when help is scarce.
I replied to this post earlier but I don’t know what happened to it. Hate it when that happens.
I just want to reiterate what has already been said. There’s no reason to suffer and if you haven’t already tried an antidepressant, it might do you some good for the time being. At least until the pandemic is eased? Please give it some thought.
Hubby was telling me just this morning how depressed he is feeling. For him I know that it’s his disease but I think he can be helped simply by me monitoring how much ugly news he’s watching on TV. I need to be better about that.
It’s not so easy for us caregivers. I’ve had that “feeling stuck”moment way too often! You can feel like you’re in a no win situation and it’s just so draining. I do try super hard to not worry about tomorrow because I know there’s nothing that I can do about it, but sometimes my head goes there anyway. Sometimes I self sabotage and eat an entire quart of ice cream. I stopped buying ice cream!
Can you step outside and maybe take a ten minute walk? Breathe in some fresh air? At least you know that you aren’t alone and you can vent with us. We understand all too well.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
In our municipality we have a "Psychological Support" group for caregivers of people with neurological or long-term illnesses.
The leading psychologist of our group tells us that it is not wrong to channel our feelings. It tells us that if you feel like crying, do it without grief.
Certainly with COVID19 everything is more difficult. In spite of everything, let me express some reflections on "care of the caregiver":
Remember that the main caregiver jobs and occupations grow along with age and the disease progression. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
It is necessary to accept that we fight in a battle that will go through times of relative stability but always "downhill" to finally come to a harsh end.
Rest and sleep well is essential. Combat stress, too.
"As say JEN2017" nobody could / should go through this hard disease alone. Especially the caregiver ".
Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one ”.
There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.
Finally, reproducing the phrase of Anne-Heady: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
“There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand”. So true! The 90+ heat isn’t helping. We were enjoying Spring but it was short. I’m trying to stay busy while hubby sleeps or zones out in his own world. It’s lonely. So why, when he tries to tell me something and I want to hear his voice, do I lose patience after ten minutes when he is stuck on a word that he’s searching for? I’m exercising, involved in hobbies, but still... just kind of ho-hum feelings. I don’t expect you to answer. I just need to vent.
I am so glad you feel this is a safe place to vent, I always did, it got me through some pretty dark times, although I dread to think what you must be going through now, in this strange world we live in. All my normal advise has gone put the window - get more help.
I do suggest you talk to your doctor. I can't believe necessary equipment is classed as non essential, but there again, we are living through strange times and what me and you class as necessary, others, who don't know what it's like to care full time for someone, haven't a clue!
Are you in the UK? If so, there are a lot of charities out there, who can offer some support, if only an ear to listen to you. Please, please reach out to the professionals, lots are just sat there tweed lying their thumbs, as we think everyone in the medical profession is involved with Covid. They are not, let them know you are struggling. It is not a sign of weakness, completely the opposite, it take strength to ask, I know that's something in very short supply for you, but dig deep, find that little extra ounce and scream at the top of your voice - HELP!!!
Sending big hug, much love and lots of strength across ether.
If you can't have a rant on here then we are lost. This is a safe place to vent your feelings. We are or have been on the same journey. I, sadly, have no pearls of wisdom to offer, but I can listen and offer a virtual shoulder to cry on.
Keep on keeping on dear friend. We are all here for you. 🙏❤️
Please talk to your doctor, both about how you are feeling and your Mum. It maybe that she is entering a new phase and maybe now is the time for more support from the Community Health team (they are still working in the UK I know) - Mum used to get a visit every couple of weeks from our Community Matron and she guided us through our journey with this condition right up until the last, making sure Mum was comfortable and putting things in place "in case", not all of which were needed but it was reassuring to know that they were there. Maybe you need to be "insistent" rather than "understanding"? None of us like to create but sometimes you have to stand your ground both for yourself and your loved one.
There are also carers groups that offer support - again if in the UK your local council will have a carers support team and there is also the Carers Trust and of course the PSPA helpline. Parkinsons charities also tend to support PSP carer and sufferers. Don't be shy about reaching out to them, that is what they are there for.
Are there specific concerns you have about your Mum that maybe you could share with us?There is alot of experience on this forum. One of the things I found very difficult until I found this forum was the blank look when you spoke to a Dr and they just didn't have enough experience of the condition to know quite what it signified or how to deal with it, but someone somewhere on this site would have had a similar experience and a good suggestion.
These are very strange times and it is understandable that you are feeling the strain. Your feelings are very normal in "normal" times for someone coping with looking after someone with PSP, the current situation just serves to amplify those feelings.
I feel the same. CBD getting worse. Can’t get registered with care agency,I need to be reassessed. Have been on to neurological nurse who said she will visit when this is all over but legs getting worse by the day and balance going. Feel so desperate as no one and nothing can be done. On Madopar but think this isn’t working as well.Spoke to neurologist who increased dose minimally,no change. Then along came Covid-19!😷xx
I couldn't have put better how I feel much of the time. It's my husband who is affected and not nearly as 'far down the road' as your Mum. COVID put paid to 2 days daycare which he loves and I have 2 days to well sometimes do nothing. Bill doesn't see danger when he gets up and I lose it sometimes and shout and I don't mean to and am immediately remorseful.
Oh and so many other things. At least we could go out in the car for short drives but now?
On the positive side, we seem symptom-free and that's a bonus.
I don't know what to say Elvira but hugs and love xx
I think a short car ride would be okay as long as you don’t get out of the car where people are around? At least it’s okay to do that here in Nevada. Kids celebrate their birthdays by decorating the front of their house and then there’s a honk-a-thon parade at a certain given hour during the day. It’s pretty cute to see the kids wave at each other. Some of them dress up in their Halloween costumes 😂
I had a spell a month or so ago. I worried the crying would not end. I got angry a little bit. The constant interruptions just became unbearable for me, I cried myself through to some other place eventually. This is all so painfull and as my husband continues to lose weight and loose abilities and bits of the routines (like a favorite TV show) we had been use to become lost , I know I will be facing the day he stops the walking and the talking and it scares me. Crying helps. I hear you.
I've been there, grieving the loss of the person you love and yet they are there before you.
Crying does help. You must be tired too. Forgive me, I can't remember what support you have in place.
When Liz lost the ability to speak it was a slow deterioration, but even in very late stages she would suddenly utter some words. They were a joy to hear. There is signalling with gestures and pointing and late on mere hand squeezes work very well.
Like all of the stages you have already been through they are scary until you get there and then, just like you have before, you will find ways of making it work. You have immense experience behind you already.
It's so wondeful that you reach out to others when your burden is so great.
I haven't come to the outsIde help stage yet. If I'm desperate, at this stage of the game, our kids are close-by and glad to help.
The grieving is starting to set in. We were so busy for so long, I was happy we were forced to slow down and take a break, watch TV, read a book, just be home.😄 One of us got to slow down, anyway, and it sure wasn't me. I also thought Jack was dying and we made some major decisions (years ago)based on his impending demise. Well, here we still are😱. Now, I have a granddaughter, for example, who attends a beautiful university close-by and she is one of the top rowers in the country and I've never visited nor seen her row😑in person. She's an hour away. Suddenly she's graduating. I've missed it all. I'm angry about it. I/we have 6 more grandkidswhose concerts and recitals and shopping trips are all going by and I'm sick of missing everything. I came up here to read and now I have to stop bcz I hear his chair so I'd better run or he will be crashing into something .........
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My Dad's post
End stages? not sure, any advice
Admiral Nurse
MY DAD
