It has been quite awhile since I've posted anything. Caring for someone with PSP has a way of swallowing you up. John has declined tremendously and we have been in hospice since September. Thought we were going to lose him in January but he rallied. Everyone came home to say good-bye, set up the brain donation & etc. The emotional rollercoaster that this disease takes you on is so very cruel. Besides hospice, I've had to bring in extra caregivers - 48 hrs/week. Tomorrow I meet with our eldercare attorney and financial advisor to see if I can handle private pay care in a facility. I promised I would never put John in a nursing home, but I simply can't do it anymore. So many tears trying to decide. I finally, after tons of "Pros & Cons" charts decided that a care facility would be the best for both of us. Then the Coronavirus hits. I know a lot of you folks in other parts of the world have had to deal with this already. Here in the US, we've been a little slow to get our act together. The stock market is tanking, our investments have taken a significant hit and I'm not even sure the Memory Care Facility will take John at the moment. I have felt overwhelmed in the past, but this time I feel cornered. I know he needs a tremendous amount of care at this point, but my mind, body (arthritis) and emotional well being are having a hard time rallying this time. Sorry for the pity party, guess I just needed someplace safe to vent. I know that my job is not to take care of John, but rather to find the best care FOR John. I'm just not sure that's possible right now. We have gone from a shut in - to a quarantined shut in. Plus it's March in WI, USA. Cold, cloudy and rainy. Need I say more? Thanks for listening.
Hugs, Alice
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Abrecheisen53
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There is nothing to be sorry about. It’s no pity party. PSP sucks. I ran myself into the ground. By the time Larry went into in-house hospice care and died I had pneumonia only I didn’t know it because I was so exhausted. With coronavirus lurking everywhere your current state of exhaustion is doing you no favors. At the end I knew PSP was going to kill one of us. I didn’t know who it would be. You have done everything you could have done. It’s time to be his spouse again. Let others do the care giving.
Yes, PSP care wears us down, with exhaustion our own illnesses come to be more pressing.
You have such difficult choices to make and it appears that so much of what is going on is not in your control. Tough indeed.
What I would have said to you, Coronovirus and tanking markets aside, is to try a fortnights respite first. I tried to keep caring long past my limits, many of us do. When I finally took the step of a Nursing Home and once I got past the guilt, I realised they could provide much better care than I could at home.
I’m facing the decision of whether to have my husband of 58 yrs. go to a skilled care facility or keep him at home....it’s difficult to keep help at home for the hours I need and also the cost....my guilt is overwhelming but my children want to protect me from my health issues and support the decision of their Dad being placed in a long term facility....this is so difficult !!!
Kathy, yes I believe we are both at the same crossroad. It undoubtedly one of the hardest decision I ever made. Unfortunately only you and your husband can make that decision. My health is also in jeopardy, so that made it a little easier. Good luck and let us know what you decide. There is no right or wrong answer. Your answer is what's right for you.
I know it's difficult but turn off the TV, you don't need all the news that is a constant 24/7 bombardment right now. I am sure you've heard a 100 times plus what to do or not do.
Take a step back, get your thoughts in order to plan your next actions. Deal with the issues you have control over, call the nursing home to see if they are taking new residents, talk to the lawyer to see what he recommends, invite a friend over for coffee and just chat. It appears you have at least some care help so make the most of the time they are there.
I read your post around 3AM last night and I wanted to respond right away but I was just too darn tired. I was feeling very similar to your state of mind, trapped with no solutions. After catching a few zzz’s I woke feeling a bit better.
The last thing we all need on top of everything else is Covid-19. I like Ron’s suggestion of turning off the TV. I like Kevin’s response of trying to have a respite, although I’m not sure where it’s safe to go when we’re under quarantine. And then Jeff’s advice of not running yourself into the ground until you’re sick as well is great advice. Easier said than done, eh? I’m hoping that after you meet with your lawyer that you’ll feel better. It’s the unknown that that makes everything so tiring and complicated.
I’m still trying to appreciate today. I watched a promising youtube video of a gal who planted a rose stem into a potato and then I watched it bloom. Stupid, but it took my mind off of hubby’s snoring. The video entertained me because it was like having candy for the mind. A small escape can be relaxing.
The investments tanking issue is a problem for me too. Mum agreed to a nursing home and moved in just after Christmas, but that means we need to release up investments to pay for it and sell her flat. Just went on the market for a flat in a retirement development two weeks before everyone over 70 in the UK is being told to self-isolate! And one that I had to cash in to pay the last bill got much less out than was there one month ago. At least we don't have the problem of me having to go over to her everyday in the flat with the risk of giving her covid.
I went through all the same anguish when my husband with PSP went into “enhanced” assisted living. Like a nursing home but better. I was told by our MD that the first couple of months would be difficult and then all would even out into a “new normal”.Im a retired RN and I cared for Bob for 6 plus years. The decision for him to enter his facility has turned out to be great. He likes it there, he has more social interactions and I feel WAY less stressed & pressured. Bob is 6’1” and 285# and I could no longer deal with it emotionally and physically. Now I wake up everyday feeling so much better !
Oh Alice you have so much to deal with, please rant away on here we all have so we all understand and this group is just amazing and so supportive. In all of this please remember to breathe and look after yourself so that you are able to be there for John. Sending you lots of love and hugs
Alice, you bring back memories. I can't believe that it's been three years since I found myself in the same place you're in, facing all of the same decisions. I haven't forgotten how hard that was. When I moved my husband into the care home, I told myself and him that it was for respite. It made the decision more doable in my mind. It's so hard to think straight when you're so exhausted. As it turned out, we were both better off. I believe it saved my life and he was getting better care than I could provide. I know what a difficult time this is which won't make it any easier, but I hope you can work everything out for both you and your husband's sakes. Sometimes we have to just admit that we can't do it any more. It's nothing to feel guilty or ashamed about.
No apologies required. We on here all know how you are feeling and if you can't voice it here then where? Ditch the guilt and enjoy being his wife again. Take care of yourself. Hugs and prayers to you both. 🙏🙏❤️❤️
Dear Alice. That tiredness can knock one for six so I am so glad that you have been able to write what you are truly feeling on this site. No one here will make any judgemnet but just understand where you are coming from. Although Nigel died last year I still facilitate our carers group meetings and I have received a directive today that I, along with all the other volunteers running such groups, have got to close them for the time being. This is at a time when their loved ones are not being allowed to go into daily respite care.Things are so ghastly at the moment and I agree that the weather does not help at all. I think I am going to post a spring photo. My photographic group theme this week was spring and we obviously did not meet as everything is shut down. I guess we can all only live One Day at a Time at present. Please continue to use this site to receive the emotional support that you so need at the moment. Big hugs AliBee
I know what you mean about the weather this time of year....I grew up in Colorado. I am a Texan now and very glad I am. We live on a ranch so I can get out and walk without worrying about any personal contact.
I am completely worn out as well and was looking forward to a 5 day respite that Medicare would pay for, it was going to start tomorrow.....of course thats now out of the question 😔
Bob, my husband, is at a very difficult stage of PSP. He sleeps most of the time and his eating has slowed dramatically. He has tons of bathroom accidents with overflow of the adult diapers etc. etc.
We are trying to see if Medicare will pay for a person to come to me for 5 days since I do not have the option to have him taken anywhere, not sure they will do it.
I am so very sad about all thats going on, I look at Bob sitting in his chair as his life is ticking away before my very eyes, it is the most horrible thing of all....
My back is hurting all the time from helping him get up, it’s truly insane.
I know. I've had a fair amount of good and bad in my life. This is by far the hardest thing I have ever done. I try so hard to appreciate each day we're together, as someday it will just be a memory. Hang in there!!
I don't see any pity, just someone trying to do their best for their loved one. I hope the meetings went well and that you can see a way forward. Remember this forum is always here for you, so rant away as much as you like. Take care of yourself. xxx
I worked in long term care for many years and there is something that I will always remember about some of my patients. Some families would write a nice "story" about their loved one telling us about the "before", what their loved one was like, what they did,hobbies, their families , holidays, favorite Tv shows, or music , food etc. We could all see it and know the person we were caring for as they were before they needed to be cared for in our facility. You are at a challenging crossroad, your decision is one that all of us hope not to have to make, but many will be in your place with the awful disease .!
Please Express all that you need to here-no judgement-just loving support. Be kind to yourself. Hugs, PatK
My husband, diagnosed in 2008 with CBD, but having symptoms for quite a few years before has gone through a lot. In and out of hospitals, falls in the beginning, pneumonia, sepsis, flu, seems like everything under the sun.! In the last 5 years, We found a care center that would pick him up 4 days a week and take care of him for 5 hours a day. They send in a CNa in the morning and a bit at night for a quick change. Take care of the assesorries and sending out Meds. It has not been easy but I found ( after a few respites). That it was easier to keep him at home. Even with my own health problems. I found it hard to trust the people taking care of him to not just give him sedatives. ( they are overwhelmed in most places). But I believe that you must do your due diligence and follow your instincts. There is no right or wrong. I even have a heart felt person come in on 2 days for a few hours of the 3 days he is home all day sometimes. We have sundowning issues and my husband loves music. So that is our saving grace. At the beginning, very sensitive to light and comforting voices. Needed compassion, many caregivers have this heart felt gift, many do not. I learned a lot during this stage about patience. And getting people in who showed me what it looked like. Hang on to them. Value them. They are gold! We have the noise cancelling headphones that play music and the “echo” that plays music from a variety of sources. I find when he is suffering, he doesn’t like any background noise. We struggled at first but with lots of support found it was such a Grace we found to endure. But, again, if you have found a place that is good at understanding the dilerium part of this disease that is gold.. God bless and keep you in this struggle.
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