For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic Completely Exhausted!!! Go to previous topic Go to next topic Go to higher level

By chroop67 On 2012.01.01 20:47
I am at my wits end. My Mom has been in a nursing home for 15 months. I am there quite often and at all different times of the day. I think that the staff is wonderful and have never had any concerns. Lately my Mom calls several times a day with outrageous stories about the treatment she and others are receiving. I offer to come and have a chat with the care facility manager but she always insists that I don't.
I just got off the phone with her, She called me crying saying that she feels like a dog. She doesn't understand nor accept the level of care that she requires. She thinks that she can still do it all herself but she can't. She can walk but chooses to stay in her wheelchair, which is best as she has fallen quite often. Her call ended with her telling me that she hopes to see me before she dies, I spent yesterday afternoon with her. I am exhausted, my siblings don't visit and are completely unsupportive. I have tried to 'enlighten' them to the reality of the situation but they take no interest and tell me that I am negative.
This may sound horrible but I cannot fathom the thought that there could be years and years of this ahead for Mom and for me. We have tried med changes but nothing helps. I go to bed hoping that she will let go and go home to be with Dad. This is not living, there is no joy for her, this is hell!

By brainstorm On 2012.01.03 21:32
I can certainly empathize with the situation you are in. I take care of my Mom at home, I have been for the last 15 YEARS, with 10 of them with her in a wheelchair unable to stand even with a walker. I, too feel exhausted. It obviously is not any better with your Mom in a facility, especially when siblings do not care enough to even visit. I have the same problem there also. I do not that when my Mom is even slightly overmedicated she is agitated, irritated, and grumpy. She is considered to be in the advanced stages. Her meds although they work, take a long time to kick in, and sometimes can easily get over medicated. This is especially true in facilities where they may not be able to give meds on schedule which is very necessary with PD. So although she may be getting good care, her meds may be off here and there and therefore your Mom have more emotions related events such as you describe.

You are right there is no joy for anyone, the one afflicted or the caregivers. It is a terrible disease, one that alters and destroys more than one life, and one that I do not feel is getting enough attention compared to ALzheimers. We caregivers are so exhausted that we have no energy to even take it up with the govt for more funding, to get better and more specialized care provided in facilities or even in home ..

As far as how long your Mom can survive in a facility at this rate, probably not forever, but can be a few years or months. Depending on her age, and any other conditions she may have in addition to PD, usually infections will take a toll and pneumonia, Flu or UTI will lead to the end is what research shows. Hang in there. Remember it can be worse, and as for the siblings, I know that when this is over for me, I will not be communicating with them, and I have already told my Mom, that I do not intend to notify them if she were to pass away, since they could not even be bothered to inquire after her once in a while.

By poppadum On 2012.01.04 14:41
I know mothers who behave exactly the same as you describe, and they don't even have PD.
Some of them try to make their children feel guilty in the hope to get an alternative for the care home. Others are quite demented but still use their "cunning" streak to get what they want, even when they don't even really know WHAT they want, just like some small children can behave.
Most of them want to "get back" to their old familiar environment, whatever it is they think their familiar environment should be because some of them want to "go back" not to their own home, but to their parents' home, depending on how far their memory has "gone back". (Sorry, I don't have the word power to explain this properly in English)
Trying to explain to them can be like fighting a brick wall. Some only have a short term memory span of, say, 5 minutes. I learned to answer short and to the point; no lengthy explanations because their short term memory may not even last through a whole sentence. I was asked to keep repeating the same short answer so they at least feel they get some kind of answer and don't feel "cast aside".

I used to be a museum guide. One day I had to guide a group of blind people. Therefore I tried beforehand to "see" for myself how blind people can picture a museum. I put a blindfold on myself and tried to walk through the museum - that I knew so well while visitors didn't. I was amazed at all the details I hadn't thought of, like: "Mind the step". What step??? Up, down, high, low etc..?
That was the day learned to be more patient with people. I certainly haven't mastered it completely yet and probably never will, but every bit helps everyone.

Yesterday I was complimented on my "patience" with my PD hubby - not an every day occurrence because most people perceive us, PD carers, as never being patient enough. Unless they're in similar shoes to ours they don't understand what's involved, do they?
Since the day I put my children on this earth I haven't felt so proud of an achievement: me, previously a fast lane mover only!

I would say: don't give in to anyone playing mind games with you because it's life-sapping, but that's easy to say from a distance.
Sometimes I still have a hard time with my totally with-it 92-year-old mother who wants everything preferably the day before yesterday and who plays that game only with ME as she has done since I was 7. However often I tell her, making sure that's she hears it and pays attention: "No Mother, you know I can only go to ...(bank/post office, whatever)... per week/fortnight... so it will have to wait until then", she still tries it on nearly every day.
I managed to get myself to the point where I almost don't feel guilty anymore because I'm trying my best and that's all anyone can do.

I do hope you get a better explanation from another carer because all of a sudden mine sounds pretty crummy. However, at least you know someone is thinking about you and your predicament.

By lurkingforacure On 2012.01.04 23:02
I too totally relate. I lost my non-PD mom in August after six weeks in rehab recovering from a fall. It was an incredibly fast decline and I think that once she got to a certain point which I still don't understand, she just gave up. It was hell going to see her every day, trying to be PollyAnna for her and put on a happy face, and dragging the grandkids along to boot, but I am so grateful we did.

I remember thinking, like you, how long can I do this? I was exhausted going to see her everyday, managing all of her everything, my kids, my PD spouse, my household, it was insane. I had no answers, I just kept getting up every day and getting it done.

Nothing is permanent, everything is temporary. You just have to do the best you can, today, with what you have. Hugs to you, I so know how you feel.


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you