How do I find the strength to cope when my mom is suffering from a rare illness called Progressive Supranuclear Palsy?

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mom has a rare illness called psp, it is very rare, she has a feeding tube, has nomore mobile abilities, cant see, and has no balance, so shlbse cant walk at all anymore, cant even brush her teeth, she isnt able to even pop the cap on the toothpaste open to apply it to the toothbrush, she is able to eat once in a while under supervision, if she starts to cough its a sign that the food is settling in her lungs, phewmonia is a very big cause of death as well as falling, well every time I go there every other day now, she looks worse and worse and is disintergrating badly..............I think she is 70lbs, and just looks terrible, she used to be so independant, now she has to rely on help from everyone and just wont do it, Its just so hard for me to watch this, pretend things are not as bad as they are, when she eats she spills most of the puree stuff all over herself too so its like shes not eatting at all anyway, She is now denying very important medications that are in no uncertain terms helping her stay alive, I am really depressed, as I feel the end is near,,,,,,,,,,,,,,please help me find ways to cope,
I call her too on the cell I bought her, and she cant even open it to answer, and when she does, she speaks with the phone upside down so I cant hear her, this all is really emotionally and physically draining me, any ideas on how to stay sane through this time?

Answers 1 to 9 of 9
Hi Susan, have not heard anything about you in a while and this sounds very, very bad. Does the nursing home your mom is in have a social worker who can talk with you or refer you to someone who can help in this time of extreme need? Does your mother's doctor think it is time to call hospice in? There have a been a few times since May of 2009 when I thought my mother was going to die, but then she did not. I don't have any immediate answers other than get a doctor to give you an anti-depressant to deal with this situational depression and find a therapist.
Honey....She should be on hospice. Check with the hospital about this. If she is receiving Social Security, this should not be a problem getting her on hospice, it could be at her home, your home or a nurshing home. you need help NOW! She's home alone??? Please talk to her Dr.'s and Social Workers at her hospital.
Sorry no one has answered yet, don't give up on us, this site is very helpful and supportive. Please stick with us and let us know how you progress.
Susan, I went and looked up this disease that your mom has because I've never heard of it before. You're right, one of the main causes of death in these people is pneumonia along with choking etc, not the disease itself. The article I read said that there is a pretty simple surgery to at least insert a feeding tube for her. Since the disease doesn't kill her outright like cancer would lets say, then why would the feeding tube not be inserted? I'm just thinking that when my mom went on hospice it was because she was imminent for dying of the disease as it spread, but your mom's disease is different right?
Susan, this is very, very painful for you. My heart goes out to you. As others have said, Hospice could be very helpful to both you and your mom at this time. She weighs 70 pounds, refuses medications, resists help -- it does sound like she is preparing to leave us, doesn't it? The Hospice folks could help you accept that and understand what is happening to your mother's body. They can't remove the pain you feel, but they can ensure that your mother is comfortable and pain free, and that should help.
Hi Susan, I'm so sorry. I can see the heartbreak in your question. I agree with all the others. You should contact hospice. They can care for your mom right there in the NH. Your mom seems to be making a statement by not taking her meds. Her eating seems to be very distressing to you, and rightly so. Since she has a feeding tube she shouldn't take anything by mouth.
I think you should talk to a social worker preferably form hospice. They can help you come to terms with your moms sickness and possible death. We're here for you.
thanks to all who have answered I feel relieved that I can come back to this forum and get love unconditionally, I had disapeared for a while just too depressed to even mess around with the pc, I have just been bumming just the name of the desease is scary Progressive Supernuclear Palsy, naheaton, it is so rare that only 3 people have in the the United States, and only a hundred in the world get it, its so rare that not alot of people get it, there is no cure and no medicines to stop the ]progression, or even anything to help her balance. Shes refusing the drops for her eyes which has caused her to go blind very fast, she has cronic dry eyes from not blinking, another thing that the desease attacks I swear in the past few days I can notice a fierce decline, more weight lose, a film on her eyes. We know the eye doctor very well, he is a very highly reccomended by a regular eye specialist, she does need surgery in her eyes, which they wont do because it has a high rate of infection, Mersa which in her case will be deadly as she is so trail, weak etc........
all we need is another infection, which in turn into pnewmonia again, and she is so weak right now that she wouldnt be able to fight the infection, let alone all the medicaton she would have to get put into them.....I have never seen my mum so bad off and so weak and sickly, she was always kinda full figured,now she is just a bone, its very sad for me to take in, I was there and just started to get all choked up now that we have a decent relationship, as we never did before we are just really getting to know each orher as well as we never did get along very well, so with that all said, want to let u all know that is PSP is just something I myself couldnf deal with, I would have to say that I would opt out,,,,,,,,,,,,,sorry guys for my sobb story, and thanks for listening
Susan, no sorry necessary, we've probably all sobbed at one time or another I know I have!. Just please get any additional assistance available, it's far too much alone you need a good support team of Social Workers, Counselors, medical attendants, friends and support groups. Resources are available, ask and you may be surprised at the help you receive.
wishing you and your mum well!
Oh Susan you poor thing. How awful for you. It's always distressing for us when a loved one is so very very ill. No matter how prepared we think we are, it's still a terrible time. I suppose the only thing you can do is concentrate on what you CAN do. Don't know the situation in the USA on what help the state can give you - the others on this site should be able to advise you regarding that, but starting making those calls. You will feel better if you feel you are doing something about the situation. My Mom has dementia and her swallow has been compromised. We have found that we only give her foods that are not crumbly and she takes all her drinks now through a straw. She seems to be able to control the fluid intake better that way. We had several occasions where she had fluid in the lungs also but thankfully that hasn't happened in a long time. If you Mom is this ill, she needs some serious nursing care. Do you have siblings - you need to talk to someone to make a plan of care for your Mom and to vent for your own mental health. It would help you deal with the situation.
Top Answer

Welcome back neighbor!

I don't even dare imagine the pain you're going through, and wouldn't have a clue how to handle it if it stared me in the face. Still, it's easy to see you're overwhelmed, depressed, frustrated, angry, and resentful. ... Because you care so much. The real downside of these feelings is that they may leave you feeling guilty, ashamed, and anxious; and the harder you try the worse things get.

Find support groups that meet in person, on the phone, and on the Internet; as your own psych or therapist. Don't hole up as you've been doing all these months. I know you're a strong, proud woman but falling off the map to suffer in silence isn't healthy at all. We're here for you. ... I am here and always will be.

Anyway, expand your support network and contact: (1) Family Caregiver Alliance, National Center on Caregiving @ 800-445-8106; Society for Progressive Supranuclear Palsy @ 800-457-4777; and the Eldercare Locator Service @ 800-677-1116.

Good luck girl, and please don't hide from us anymore.

-- Ed

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