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?

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PS - maybe since she has been in the hosital they cold arrange an OT and/or PT home eval - that's what helped my mom, she would never have taken my advice on anything
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Hey - have you been on http://www.psp.org/ already? There are some meds that may help, in particular amanitidine, and that includes antidepressants (no reason not to treat any symptom you can even though there is not a cure.) They did not think Sinemet would help my mom with her vascular Parkinsonism, but it has let her feed herself a lot better at least adn she toelrates a moderate dose without bad side effects. You might visit a geriatrician or phsyiatrist (PM&R doc) for an evaluation and any ideas on how to improve her safety and mobility with equipment and home adaptations too. Just like your mom, a lot of docs tend to get fatalistic abotu progressive diseases but in reality there is often a LOT to be done to irmpove function and quality of life. Perfectionism tends to be the enemy of rehab - you have to blieve that if a thing is worth doing, its worth doing *badly.* (G.K.Chesterson I think)...God bless, its not easy, and my mom rejected a lot of things that would have helped her keep reading and otherwise stay more involved in life, and its good that your mom has you to keep trying to coax her out of that shell and at least get out to bingo! My mom gave that up too, started to tell us she hated it...we knew otherwise. At least the walker and the handrails on the steps that she did accept let her have an extra couple of years at home...
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Not sure if your mom is still living with PSP, my mom was diagnosed in 2007 and has had significant decline. She keeps her eyes closed most of the time, it's a real effort for her to speak if at all, she drools, chokes and can't walk without assistance. She's also incontinent and is complete care. At times I have to actually feed her as she can't manuever the fork to mouth. Thick it in her drinks, but the coughing and the noises are enough to send me nuts. She lives with me and my husband and kids and it's a real stressful situation as she can not be left alone for safety sake. I just wonder what stage she's at......and how long this type of suffering will go on....She never acts upset or anxious about her condition, she seems to have just accepted it. She moves very slow, if at all, and never without me right by her side. She's had a few falls when she impulsively gets up on her own....i just don't know what to do or what to expect.
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You're onto something, Pirate Gal. The outdoors does wonders for the human spirit as well as the body. Look what happened to Jim Nabors after he moved to Hawaii and lived along the water....
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Progressive Supranuclear Palsy Overview
Progressive supranuclear palsy (PSP) is a rare degenerative disease of the brain. The disease impairs movements and balance. Many people with PSP also experience changes in mood, behavior, and personality. A decline in cognitive mental processes, such as thinking, memory, attention, and speech, is not uncommon. When these mental changes are severe enough to interfere with everyday activities, they are called dementia.

....just a snippet from a medical website....

Wow that is a tough one...really tough...since she does not like going out ....if she can still do outdoors things I would do them with her. Nature has a way of healing. Can you take her on a drive to a park or the beach or a lake or just somewhere where the wind is whistling through the trees and birds are singing...I would try that....did she like the outdoors...just a thought!
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My husband became very ill five or so years ago with a combination of many diseases. I did like you are doing and did a lot of research on my own on my husband's behalf. I insisted that my husband see specialists and fortunately, they have been able to help him A LOT. My sister-in-law credits me with saving my husband's life but of course it is the specialists that did the saving - I couldn't have done it. I just dragged my husband to the specialists. So I wish you good luck with your research and I hope there is a specialist out there who will try something to help your mom that might work. That's what happened in my husband's case and the experiment worked!!! It t took five years for things to improve but they have.

Try not to give up on your mom. She may be passing through one of the stages a person seems to go through after being told their life is ending. It would be a terrible shock for any of us to learn the news your mother has learned. I hope in time she will be able to enjoy some of the time she has left. In the meantime, you can cry together about the bad news. Encourage her to talk about how she is feeling so that she can let it "all hang out". Respond by giving her hugs galore. Be with her as much as possible right now so that she doesn't feel "so alone". I have been through a serious depression and all I really wanted at the time was for someone to BE WITH ME while I cried and cried. But without antidepressants I would have been a hopeless case so please ask the doctor to let your mom try antidepressants until she finds one that will help her. I, myself, had to try three different kinds before I found one that "fit" me. Please tell your mom for all of us that we care about her and that we are here to try to help both her and you. We will not abandon either of you. Much love, lcs
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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...
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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!
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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
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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.
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