Mom has a very rare illness with no cure and no medications to help. It just gets worse. She is very depressed and has lost the will to live. What can I do?

Contact Hospice

Who wouldn't be depressed? Absolutely, contact Hospice. They will show you the way. I'm really sorry about your mom.

YES - Contact hospice. They will help your mother and they will help you and your family.

What's the name of the illness? Talk to the people who diagnosed it.
Tell THEM what you have told us. Ask for multiple opinions.
Research it yourself.
Be kind to your mother and make her very comfortable.

N1K2R3

The name is PSP it is a rare illness, but if she did what she is asked to do, and just be a little patient and wait for assistance, she wouldnt be at such risk, people have lived 6-8years with this illness,,,, only one in a hundred million in the world get it, there is not much research on it at all, because its so rare,and mostly misdiagnosed,and so late after the desease progresses, that there isnt any time to research it! I had to educate the nursing home myself with all kinds of printouts on it, whatever I could find, and am a member of a site called wemove......which updates me on any new findings, etc,,,,,,,,,, but it isjust getting worse and worse, PSP stands for progressive supranuclear Palsy, and for sure it is progressing fast, hospice wont take her because its not considered terminal, you can live but always with assistance, mobility wise, and it also causes dysphasia, where food and drink go down the wrong pipes and end up in lungs which eventually means aspirated pnewmonia............I agree with everyone, on keeping her as comfortable as possible,but she also needs to go to some of the activities they have there,and they have alot, I am taking her to bingo Wednesday and playing too, to aclimate her to other people and her surroundings, she never wants to come out of her room! ITs so killing me to watch my mum suffer so much, very sad and depressing at the sametime! I am really doing all I can do and more, I have researched it i think more than there is left to find out! I also go online to PSP support groups, but there are never anyone there,as I guess the desease is just that rare hardly noone hasit! Just have to keep showing her that she is not a burden, which she feels she is, even to the nurses at the home, they are getting paid to do this work,and she doesnt want to bother them!I love her so much and it is just killing me to see the progression daily and taking my spirit, but Iam the only one who can change that!
I will keep trying..............thanks to all who have given some ideas,hospice would be awesome, but the desease has no exact time frame to go on, they want an approximate time left,and we cant give them that, because its so different for everybody...................thanks all, she fell last night again and had to be rushed to the ER, for stiches and cat scans,x-rays etc............... I was right by her side, this is so hard on me,,,,,,,,,,,I feel like falling apart in sometimes with her right there,ut i have to be the strong one!

I would get her on an antidepressant, they work wonders. Lots of company , create things to look forward to, things to do, etc. I went thru this after moms surgeries for about 6 weeks and the antidepressants helped. Collect coins, get a puppy, go places, we did it all. Good Luck!!

We received a message recently from a caregiver who reminded us it is OK to show fear, sadness, being unable to cope at times - that this can really be a help to the patient. They can see that their own feelings are understood and shared. That doesn't mean to give in to the feelings, but having them is understandable and expected. Maybe you can do this a little with your mother, let her know how very sad you are that you may be losing her if she does not change, and maybe this will also help you to understand how your mother feels. Accepting a situation does not mean you are giving up! But if we spend less energy fighting what we have to deal with we will have more energy to make our current situation as good and comfortable and loving as we can. I wish you good luck and am saying a prayer for you and your mother.

Please look at the resources provided at this website:
http://www.psp.org/mission/education/caregiver.html?


PHPSESSID=50616314db22ac232caaa5f3c132fdd7
Page 10 - a listing of Online support groups

Susan,
Sorry things are worse with your Mom. I think we both have this "I have to fix everything" mentallity. In the end it just wears us out. I am trying to tell my self that at the end of the day I just need to say I did the best I could. My Mom won't leave the house, she could , she just chooses not to. I try to get her to do something and it frustrates me also that she won't participate in any activity. I tell her there is no reason to become housebound. She says she isn't b/c she leaves the house to see the doctors. I don't like to see her wasting the last years of her life either. So...try to take a deep breath and know you are doing your best, you do more than most kids. Spend some GUILT FREE time for yourself. :) Take care!

Susan at least you are there with her, don't abandon her in this, it maybe just time to help her pass through what can not be fought or even really understood as it can't be controlled. I hope she is not in pain anyway, nor you for that matter. Take care of her and yourself and count each precious moment you have well not the icky ones any how, and Hospice might be a good resource as well...