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PSP Association
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Taking Time for YOU and THEM

As I sit here in this hotel room right by Ocean Beach. I have read a few of the posts & have come to realize that the one thing we all have in common is TIME. My husband Ray was diagnosed about 3 years with Parkinsons then it was changed to PSP. PSP is a terrible disease and one not to be taken lightly but, I really know that taking care of ME has been a tough thing too. So with work, appointments, physical & mental care it's been a challenge but, my friend said it best, "Take care of YOU. IF you don't do that who will take care of THEM?" So even though, I work and to all those things I thank GOD every day for my family and friends that keep me grounded. Yes, I spend time with RAY (like today we will go for a nice long walk by the beach!) and find time & moments to make with him but, I will try to make time for ME too. I feel guilt at that but, I now know I need to do that.

I cared for both my mom & dad until they passed but, I also had a caregiver come in and help too. Taking care of your loved one is a FULL TIME job (24/7) but, don't forget yourself. I love him to pieces and will truly miss him when he is gone but, I need to re-focus on myself. I find myself in pain and tired and worrisome but, I know to best help Ray, I need to fix me too. Prayers for you all and your families and for me too. ((HUGGz)) Enjoy your slice of life, savor it, life is too short to skimp!

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Well Done Seawink! It is the only attitude that will get you and your husband through this journey called PSP. To give your man the love and attention he is going to need, you will need to be in top form and this will only happen if you are well rested and cared for yourself. So yes, accept all help offered, demand more when required, most of all, accept you will make mistakes, get tired and frustrated. It is part and parcel of PSP, there is no room for any guilt. So ditch any lingering feelings now. Your husband needs you, he won't care if you are perfect, as long as you are there, still loving him. So enjoy your cake, take plenty of you time and cuddle your husband as much as possible. The rest? Well join the rest of us in just muddling along, taking each day as it comes.

Sending big hug and much love

Lots of love

Anne

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I could not have said it better!

Sending Hugs ... Granni B

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Well said Seawink!! It is ABSOLUTELY imperative that ALL carers take some time out!! We must look after ourselves in order to look after them!! Take note everyone please!! That cake looks delicious!! X

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Seawink what a great post. You are so right too. I wish I had realised that while we still had time.

Love that dessert. Can you send a slice? 😄

Marie x

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Bravo Seawink ✔️✔️✔️

Its all so true and we need to reinforce this constantly!!.

It is so hard for caregivers to 'withdraw' themselves to take breaks. It takes an act of will, planning, acceptance of risk and a strength of mind - also self-love. It's imperative tio stay healthy for your loved one!

👍👍👍

Anne G.

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Dear Seawink

Absolutely agree, it takes time, determination, juggling. and a lot of fingers crossing but a little slice of time for myself every now and then makes me a far better carer. Less screaming banshee more loving wife is the result of time out for me!!

Love Tippy xx

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All the advice I get is take care of yourself.....today my husband was at a facility near by that has people with similar issues they play games and sing do things like that. After he left (he was taken by someone else) I got extremely sick....both ends, not sure why but unfortunately I was sick the entire time he was gone instead of doing something fun :(

I have lost 31lbs. due to stress, my anxiety is through the roof and to the moon!

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Hi Jubilee!

Well, that just sucks that you got sick. Hmmm....sounds like your body is "forcing" you to lay down and "take a break"???

I SO understand where you are: everyone says "take care of yourself" and you want to say back: "Yeah, you bet! I want to! So, can you tell me how? How, when (in some cases) there is no program to take my loved one, even for a few hours? How, when I don't have the money for private pay and I don't live in a socialized-medicine society? How, when we have no kids (or the kids are in different towns or there are no sisters/brothers nearby, etc)? How the _%_*_@ am I supposed to take care of myself??!

I don't have the answers for all these very real - very trying, conundrums. But I will only offer MY thoughts (since that's what we do here! )

MY PROBLEM: I was absolutely convinced that I could not "leave" my husband to anyone else's care for a weekend, because they would not know what to do with him, or he would be embarrassed to be looked after by anyone else, or I would be too mortified to be "pushy" and ask them to give up a hard-earned weekend to look after him so I could go off and "have fun".GUILT GUILT GUILT! (See Heady's many missives on same!)

MY SOLUTION: I did have step-kids (we had no kids together). I planned a discussion with them (one by one) where I said "I love your dad with all my heart, as you know. I will do everything everything in my power to look after him to the end, and to do it in our own home: the one thing I most need is to get some time away - not just 2-3 hours, but a 48 hour period now and then - and for that I will need someone 'familial' to come in and look after him. I'm prepared to organize Home Support (care aides) to come in twice/day to do bathing, toiling etc, but you would just be here to "Be" with him and see to his meals etc.

SHORT TERM REFRESHES: I was listening to a webinar by Janet Edmunson, a PSP Caregiver and educator who talked about how she found places in her house where her husband didnt/couldn't come, and she made them into little "shrines of relief" for herself: with a little bed, or great lounge chair, soft blankets, good music (her iPhone) favourite snacks (would have to be Wine for me! - ) nice pictures on the wall and somewhere where she could just retreat for a while after checking that he was fed/toileted/resting.

ACCEPT SOME (MORE) RISK: When you look after yourself by removing yourself from his space for a while, be it for an hour, or for a weekend, you are ACCEPTING SOME RISK. That is OK Jubilee! - That is OK. His life is full of danger, doom and risk anyway because of the disease - let's be real here: He is however, at Home. That is fantastic for as long as it can last, so allow yourself to Accept Risk - that he might fall, that he might call for you and you aren't there immediately, that he might wet the bed, that he might not get what he wants at the moment: All of that is better (for most) than being outside of the home, providing they are GENERALLY safe still.

I know that all these things, you've probably thought of: I'm just trying to give you encouragement to put yourself ahead of your dear hubby for a few hours or days now and then! That's what I find from so many spouses here: they just can't seem to accept the risk and let their hubby have less than 100% of what they MIGHT get, and take some time away for themselves.

MY FINAL COMMENT: I am now on the other side, Jubilee: My husband passed, shocking me, in July of this year. I thought we had 2-3 more years. The one thing it leaves me with in terms of perspective on this matter of looking after yourself, is: You Feel It Will Last Forever....but it truly doesn't: Yes, each year may seem like a very long time, because you aren't just looking after your husband in a way you never expected to, but you are also processing deep grief. It will not last forever - it will not. You will be on the other side of this. Meanwhile, keep close to us, and keep looking for ideas for how to get those breaks that keep us going.

I feel deeply for where you are at.

Hugs XXXX Anne G.

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Anne,

Great advice.

Richard x

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Anne, so true and especially about the acceptance of risk. Once I did that I felt so much better.

Marilyn

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Thank you for taking the time to reply in such a wonderful way. I have been going through 3 really rough days, not so much caring for him, but I am having anxiety attacks out the roof....I collapsed this morning just could not stand.....I feel my insides are exploding.....the thought of being out here on the Ranch, that we thought was going to be this wonderful retirement together, is terrifying.....we built a house and guest house it’s a big deal for someone alone....

This morning at 5:00 I was in complete panic, I got up and went in the bedroom where Bob was and told him I need you to hold me, I need your arms around me. Just a bad bad day, we went for a walk down to the “tank”/Lake on the ranch, he did great I could hardly move. I don’t think I want to be out here without him....God knows it would be impossible to sell and get back what we put in....I feel like I want to be in a tiny home in town, it’s crazy I have only been here since July.....

Cooking and Gardening are things I have loved and everyday I can not bring myself to do either.

Gosh, sorry, I am going on and on....I have many things to be thankful for I just can’t seem to come out of the fog....

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You have lots of reason for the fog! But intense anxiety can be crippling. I hope you are seeing your GP for support? You might need a temporary med to even the keel for a while?

Keep us posted Jubilee - you're not alone.

❤️ Anne G.

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Thanks raincity, wise words..!

I was needing something like this today.

Thanks again

Elena

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Hi Elena! - always nice to hear from you ☀

AG

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This is so true. I also felt great sadness when he was first diagnosed. Our world and plans were no longer. I knew we now had to travel a crooked path that I had not idea where it would go. Every day I wonder if it will be his or my last. I have decided that plans need to be made and time has to be spared. Yes, indeed the guilt is there lingering in the background but, I have now accepted the RISK as you say. I love him to pieces but, I need to love me too. Family will come together whether they are blood-connected or not but, seek out others to help you. You are not alone, we are all here to learn, live, & love. I am so thankful for this forum, it helps me to see how much we are all the same. Take care and be happy...enjoy what time you have left. EAT THE CAKE!

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Jubilee, lots of good advice has already been sent to you, but I would like to remind you that self care isn’t just about taking time off. If you have lost that much weight perhaps you need an appointment with your internist to be sure there are no underlying health issues for you. It’s not fair but time marches on and with it your own susceptibility to illness. Please check in with someone. Hugs

Marilyn

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Thank you Seawink.Sometimes it feels like this is it forever.We all hate to ask for help and admit we are crying inside.I have never admitted to any of my friends what it feels like.They tell me I am wonderful!I surely am not when I am telling my husband to stop that ghastly keening sound he makes when he is upset.Or I feel inside I want my man back not this man child.My daughters too live hundreds of miles away or they would help more.They are great when they visit and light up our lives but I want them to live their lives well and not be sucked under too.Well this sounds like a poor me post today.Sorry.My 90 year old mum who lives next door is in bed too just now so I am a bit stretched as scared leaving Duncan to see to her.You all get these things I know and understand we are not saints and we are grieving for the man we have lost in the depths of this Damon psp.

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I’m on the other side of this in that I feel guilty that my husband has to watch me go through this. I used to be so strong and capable ,now,,,, we’ll you all know th e score. Luckily at the moment he still works as I can get around the house, self toilet etc. and I encourage him to have ‘me’ time, he enjoys the local football team and so he doesn’t have to worry about the garden, I get someone in once a month to have a tidy up as it was my hobby, not really his. Wholeheartedly agree you carers do a wonderful job and must therefore take time out. Get as much help as you can afford or is offered. We don’t have children so are reliant on strangers.Jaynexx

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DIDO Ja\ynexx I am having the same emotions as you as I read this post . I feel so quilty all the time ,feeling I am not suppose to be the the recipient of my wonderfull husband caring for me . I always saw myself caring for him . But I assume God had other plans . To all care givers thank you .

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Hi Jayne - how is it progressing? Slow, I hope? Good to see your language is keeping up!

Hugs to you XXX

Anne G.

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Hi Anne,

I’ve been put on Madopar which seems to be helping with my movement. The consultant doesn’t seem to think it’s showing enough promise though to revise his initial diagnosis of cbd. My mood has improved so I’m not crying everyday! Only when the reality hits home when I try to do something and find I can’t then I grieve for the life I’ve lost. I really miss my independence, I haven’t driven for over a year and relying on others is so exhausting,having to think ahead all the time.

I do my grocery shop on line now as the last time my hubby took me round the supermarket I just felt so overwhelmed and confused I couldn’t face doing it again! And I found my legs getting very weak half way round. The staff said they could assist me by wheeling me round if I wanted it so might try that for the Xmas shop. It’s so frustrating if I forget to order something.

Although some days are better than others, I’m under no illusions as to what I will have to face in due course,especially when my face gets really tight and I end up talking out the side of my mouth. Hoping the speech therapy will help. With my soft voice and hubby half deaf , communication is is becoming difficult!!

I appreciate your asking after me and hope you are now coming to terms with everything you yourself have been going through.

Hugs back,Jayne xx

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Hi Seawink, oh how I would give anything for just one more walk along a beach with my darling Rod, but that will never be. I just wanted to respond to your mention of guilt, something every caregiver will experience unless they are as hard as a rock. Guilt is a natural emotion that can carry a bit of stigma and I have many friends who have made me feel that it's not ok to feel guilty. Firstly, if guilt were that easy to ignore then no one on this site would ever mention it but it crops up most days in one post or another. From my experience, guilt is a natural feeling that needs to be processed and accepted and it's only when the feeling becomes so obsessive or overwhelming that you struggle to function that it becomes a problem, otherwise just go with it. It's all part of the intense love that you have for the person you care for. Now I have taken time to think about what I did for my husband during his 8 years of PSP compared to what I feel guilty about, what I did wins by a mile. The guilt creeps in from time to time but it won't win. If I had to do it all again I would do it in exactly the same way, guilt and all. Enjoy your walk on the seashore with your man and may you enjoy many more. With best wishes to you both, HilsandR

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Great insight about guilt Hils, well said.

Xx. Anne G.

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This post and the replies were just what I needed to read this morning. I am struggling big time mainly with exhaustion and I haven’t even got Steve home yet. There just seems to be one issue after another. We have been lucky enough to get funding for 24 hour care at home but there has been a lot of equipment to get in place and I am juggling setting up the house for him waiting for deliveries alongside getting up to the hospital each day. I don’t feel comfortable if I don’t spend a lot of time at the hospital as he is in a room on his own and should have 24 hour supervision but I know he doesn’t get this as he has had several falls etc when nobody was with him, he has had accidents wetting himself when he isn’t in continent he just can’t wait 20 mins for someone to help him, I have then found him in nappies which he doesn’t need and it’s upsetting. I know the ward is very short staffed so I feel I need to be there but your post has made me realise I need a break as I am shattered, I keep putting it off thinking If I can just hold on and wait until he is home with the care in place then I can breathe but it is taking a long tine to set up as the first agency pulled out as his needs were too complex. I have really ranted and I didn’t mean to but you have made me realise I need a break. Have a good day everyone xx

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Better to get that break before he comes home??

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Take care of you. He won't be much without you. Patience and prayer seem to help for me. I am not sure if you have time but, most important make time. I know it has been so hard for me but, after reading and learning here I know I have to schedule it in somehow. Don't cheat yourself! I realize that when I do take time and am a better wife & I treat him better. Why should you scrimp on yourself? I say EAT THE CAKE! Be good to you. I will pray for you and your hubby.

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Very wise words, hope the cake was as good as it looked.

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So very true seawink. Despite being told this many times I let my guilt take charge and had a meltdown which resulted in my Mary getting less than perfect care. I now get out on my bike at least three times a week and clear my head. My care of Mary has improved no end. All the very best with your journey together. Rob

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You have a lot of company! I know how you are feeling because I am traveling the same road, just a different set of letters:?CBD.

We are into our fifth year and his anger and aggression wear me down.

I fear love sliding away and I too have a hard time thinking about myself.

Everyone tells us to stay strong but difficult to do. Our blessings are many but he does not see that anymore. I pray you find peace.

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Absolutely agree ! The anger, aggression and personality changes are the hardest thing to deal with particularly when sleep deprived as we all are. I think we can only stay strong if we take an occasional breather come up from the depths and breathe a little fresh air. Sounds so simple but oh what a juggle to do

Take care of yourself

Love and hugs Tippy

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I am so blessed in so many ways, two wonderful sons, one lives near and the other about 150 miles away, two grandsons and many good and kind friends.....it’s just the night time, the daily things no companion and living in a new place....if feels so unsettled, scared to the point of panic....I ask the Lord everyday “what are we going through this for” so so so sad. I read y’alls posts and my heart breaks for all of us. We all need to meet on a cruise or something and hug and cry knowing we ALL understand more than anyone else can. If Bob had a diagnoses of something that had some kind of treatment I would feel like we were at least doing SOMETHING....but for the Dr.’s to just shrug and say nothing can be done is just horrible. I keep trying to remember him as he was and it’s getting less and less faint, it makes me sick.

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All of your emotions are totally understands and valid, being a full time carer is no mean feat and requires a lot of energy, patience, time and compassion. This all takes its toll on the carer and it's understandable that sometimes you feel you can't cope. I lost Ben in May, three and a half years after diagnosis, a relatively short time compared to others. The small amount of time I had to myself was very precious and as long as you feel they are in safe hands you can partially switch off. I don't think I fully switched off at all but it was good to have someone take over for a while. I wish you both well and am pleased you have realised the importance of 'being you'

Love Kate xxx

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Kate

How are you doing? Strange to think of no Ben, just as I find life strange without G. Have you been able to get out with friends? I am so up and down with that. I sometimes feel I am going around in circles! I think the grieving process is much more complex than I thought. One week I am doing fine and the next I come crashing down again! How is it with you?

Take care of yourself.

Hugs to you.

Marie x

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Hi Marie, I am getting on with life and have lots of wonderful and supportive friends but I still have times of deep sadness and almost want to wallow in that time. I still haven't managed to have a really good sob, something I think would be very beneficial, almost a purging of grief and something I would welcome. I have no close family nearby and that's something I would love so undecided if I will move to be near to my sisters, I don't want to rush into anything that I may regret later. I am going to Morocco with NannaB in March, it's a singles group holiday for over 50's, not what I would have chosen had Ben still been able to holiday but I'm excited at the prospect of visiting places that Ben and I had on our ' to do list' and it should be fun. I am visiting lots of family and friends who I haven't been able to visit for the pat four years so it's been quite full on, lovely but very tiring at the same time. What are you doing with yourself?

Sending lots of love

Kate xxx

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Well said, Seawink. If you are in Ocean City, MD, we are only about an hour south on the Chesapeake Bay. We try to walk together, and watch the sunsets, but sometimes, I walk out on the beach alone, just to collect myself. We are also 3 years in to my husband's journey with PSP.

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I would love to go to MD. I spent time nearby there when I was in the US Navy. I was doing work in Washington DC and I rented a car and drove around MD. Such a beautiful area. Who knows where my travels will take me some day. For now my journey with him is busy with daily challenges but, I too take one day at a time. PSP is tough to deal with but, we are adapting. ((Huggz))

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