They wouldn't let me on the site and then said my email was not available. Of course not they already have it. Has been a very hectic and stressing week so far. D had to have a tooth pulled, no trauma with that fortunately. But since then he is much weaker. Having much more difficulty getting up and when he asks me to help him I suffer the consequences. Also incontinence much worse. Shoulder arm, back all hurt a lot. I am so stressed out now from lack of sleep and trying to help him without hurting myself, I don't know what to do first. So very frustrated, I could just sit down and cry, which I prob will do shortly. A deserted island sounds really good.

16 Replies

  • so sorry Audrey. I know just how you feel.

  • OK this message is my 2 post written to you, another example to my posts just 'going away'...maybe my own fault maybe not. But I have to rewrite you ...so here I go...

    I wonder if a good vitamin B shot might revive his strength. Any form of surgery can be very weakening...and a tooth is I guess as traumatic as any other surgery....A good vitamin for several days ! Can he walk? forgive me I cannot remember a thing.

    I feel your pain....I am seriously considering balance classes, for me! I need to know how to roll out of someone falling on me or how to repel a fall. My knee still hurts from B falling on me at the beginning of summer. One of the things I DID learn is the closer you are to the patient when helping them up, the better your balance and use of your own muscles. when you are close you can lift with your knees,and thus, you are not pulling your shoulders out of their sockets or pulling your spine ever which way....But for now you need a chiropractor and or a physical therapist and especially a nice comfy bed and a good nights sleep....several nights.....Where do you live again,,,UK or US? UK seems to have it semi down how to get carers. If you're in the US ....well...I should be, but I am not, very smart in what kind of provisions we can receive. B did receive home healthcare, pt, ot speech. But longterm day or night care? and care for the carer? I don't know.....

    So darlin. All I can say is that B too, is sort of declining. Not in his balance, but in his ability to swallow, cough, spit...or drool! our dr referred him to another speech path who will help him with all of this. I am excited as we need to start thinking about what foods or textures will be good....and how to save his life if he chokes!....two weeks ago he choked twice! and I could not do the Heimlich on him.....I was sooooo scared. Worse yet my grandson was over and witnessed grandpa choking. Face dark red oh....scary scary scary. So find a good class that might help you learn how to help the patient, get you some first aid classes and be proactive in getting help for yourself.

    Remember If you don't sleep....husband's care is at risk.....so you have to take care of yourself to take care of your husband....but you already know that....we all do........

    Love ,


  • Hands up anybody that actually does think of themselves first!!!!!!!!

    I'm afraid I fail miserably!

    Lots of love


  • Never, you know that Heady. I have cancelled more Dtr appointments for me its a joke.

    Lots of love back,

    Auddonz (Audrey)

  • Let your doc know that you're at this desperate point. He/ she might be able to come up with some help. You need respite if you can get it. If you are in the UK you may be able to get some help with bathing him etc. vitamin B12 shot might help you. Husband may need an anti depressant to help him.

    This is a difficult illness and you both need all help that you can get - for both your sakes.

    Hope you manage to find it, and I hope your doc and your husbans's doc can come up with something to help you. X

  • Auddonz, sorry to hear how stressed and in pain you are. You may find that the anaesthetic they used to pull the tooth has affected the PSP it is known that some anaesthic inadvertently scramble some of the brain pathways for neurological conditions such as PSP.

    So the slight decline in D you have noted may be permanent so you need to go to your GP for your health: lack of sleep, muscle and joint pains and depression so you can help D more. You need also some help with D which your GP may be able to arrange.

    Are you on your GP's priority list as full time carer? It helps get appointments and home visits. Whenever I need appointment for M they arrange a double one so I get a check out even though I do not ask.

    Best wishes Tim

  • Audrey is in the US I'm afraid! No "priority list" for us!

  • So right eastern. House calls I don't think so from a Dtr. Found a vet to come here and take care of our dogs, which helps out a lot. They are big and I can't get them in the car myself. When we were young, a long, long time ago we had a GP who did make house calls. Wouldn't that be nice if there was someone who did that now.

  • I have to say, my guy's GP recently offered to come to the house anytime we thought he couldn't get out. He is a great GP, and his office is full of lovely people. I like going there! Unfortunately, but not surprisingly, he has a terribly long waiting list, so he isn't MY doctor! We do treasure him.

  • You are very lucky eastern. Our GP doesn't even go the hospital in the event D has to go there which I hate. Other than that he is very caring and does answer my emails which is a plus.

  • Hi Audrey, I hope you have had your good cry by now!!! We all need to make time for this release.

    The incontinence - I wish I could go back and re-write the last two years. I would have put S in the thick night pads straight away, or the convene. All those sleepless nights, with him getting up every 15 minutes, must have taken years off my life! There comes a time, when enough, is enough. Try to get him to wear pads all the time and USE them!

    Get some help from a physio, or who ever, to teach you how to move D! Get some treatment for your injuries. I go regularly to an Osteopath, normally keeps me fairly pain free. Although, I have done something recently, that is taking its time to heal!!

    The desert island, well every so often, this subject comes up. We have all agreed, that, it has to be hot, full of sexy young men to take care of us and few young women to look after the men. Our loved ones are welcome, with the help of the above to take care of them. At night, they WILL be in another part of the island, so we can party until we drop. Sleeping will be done when it's too hot for any other activity!!!!

    Lots of love


  • Right now Heady I am going back to bed before making dinner. It has not been a good day :(

    Love back,


  • That's the best place Audrey! Hope tomorrow is better.

    Lots of love


  • It isn't Heady. He is still very weak and having more problems getting out of bed and or a chair. Left a call with the stupid neurologist who has not been answering my previous calls to see if she has any suggestions. It has been suggested perhaps having his tooth pulled has something to do with his change. I took a short nap today but not enough to get my head together :( He is now wearing he Depends during the day as well as night.

    Lots of love back,


  • Audrey reread Amilazy's post. Some surgery sedatives/anesthetics may be the problem in hubbies increased balance problems. Call your gp who might be able to get a hold of neurologists who might be able to find a way to get him back up to snuff. Good luck Audrey....If you can't go to that wonderful desert isle of Heady's, then at least turn the radio up and dance! ...maybe after your nap......I would love to go dancing.....

    Ok you are in the US....I will try to remember that......I think there must be a way to get help. Call SSI workers? Is he getting Social Security ? your social worker or counselor should be able to help you.

    I swear we need more neurologists . You cannot get an appt any sooner than 3 months out. They will not accommodate you anymore than the 15 min. visit allows. They will do what they can, But i think that they are just over burdened. The more maladies we discover, the greater the need for specialists.....I so apreciate my gp who said "I don't follow the 15 min. constraints, If you have q's or need to talk....i'm all ears......she is so wonderful...So like I said before be proactive (i say it and don't do it but oh well for me) for your husband and for you....there will be someone out there who will give you more than 15 minutes of their time


  • Think I will send our gp an email. He usually is very good about answering them.

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