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

Topic Not sure how you all handle this..I want to run away Go to previous topic Go to next topic Go to higher level

By overwhelmedinFL On 2009.12.31 04:02
My mom is declining so quickly

Jan 09- riding her regular bike 6 miles a day and water aerobics, line dancing

March 09 Her husband fell and ended up in rehab/nursing home until 6/1

Mar-Jun mom totally STOPPED excerising and drove 40-80 miles a day to nursing home to see her husband.

PD siezed the opportunity and started to wreak havoc

Aug 09 - she willingly gave up her driving
Sept 09- she called me and told me she needed help and wanted to move back to my town to an ALF or the likes with her husband. We searched for a place, we negotiated and found a place they/we could afford

Oct 17- she move in. THey love the place but she still declines.

Since moving here she has fallen at least a dozen times. It is almost like this happened so quick she does not realize her limitations. When around her I feel like I am constantly correcting her or tellign her to stop doing something that is dangerous. I hate feeling like her "mother". She bends over to pick up stuff of the floor and won't use reaching aids to do it (even if they are right next to her. She walks away from her walker wihtout looking down to make sure she won't trip over the base of the walker. We went from a regular roller walker to the ustep because she would not pull the brakes on the regular...well on the ustep she won't let go of them even if the walker is going to fast and 2 feet in front of her. She is starting to slip on her meds but I have mom at Independent living status (much cheaper) because I felt it important to keep her handlign her meds as long as possible. She has been on meds since 2002 and I felt she was better at it than the ALF would be. Paying a ton more money to put her to ALF status just for med dispensing which woudl not be necessarily consistent didn't make sense...

Financial stress... Movement clinic neuro added Azilect almost 3 months ago and we see no benefits and the cost to us is 300.00 a month

I got laid off on 12/1 and lost take home pay of 4k and now have to pay cobra for the family

Here is my best part.

christmas eve: dad fell again, broke his hip and will again end up in a rehab. Mom wants to be at the hospital every day and when he gets to rehab she will want to be there every day too.

How do I tell her I cannot do this every day (take her back and forth because it takes 4 hours or so including time to get her out the door to the hopsital and then back). She cannot get around with her walker at the hospital so I have to take her in a wheelchair which she cannot push I have to stay so she can get to the bathroom etc. I need to tell mom I cannot do this but her fix is that she will get the ALF to drive her. They won't do it for free so it means I will have to pay... I don't have the money!!!!!!!!!! Due to this back and forth to see her husband she is messing up her meds...often very late...missing doses completely.

The more I cater to her the less time I have to seek employement.

I wish I could see a counselor but don't have the funds. I cry all the time, I cannot handle doctor appointments with her at the movement clinic because I cry so much and it is not something I can control

Has anyone here as a caregiver benefited from Parkison support groups?

I am really sorry if this post does not make any sense..I type through tears, frustration, desparation.

By Emma On 2009.12.31 06:54
Oh my dear, what a burden you have to bear. Your post makes perfect sense. Many of us on this board have at one time or another experienced the frustration, fear, desperation, guilt, anger, crying, hopelessness, all of the things you are feeling. With your mom's seeming rapid decline you really haven't had much time to adjust to this reality and that makes it even harder.

I know that you want to help your mom but do not take on anymore financial obligations than you can handle. Are they qualified for any kind of assistance for medications or care? A hospital or nursing home should have a social worker to help with finding resources. I can understand her wanting to be with her husband when he's in the hospital, but unfortunately we can't always have things the way we want, especially in extreme circumstances. You may just have to tell her no and tell the home she's living in that you cannot pay them to transport her there.

I know that a lot of people benefit from support groups. I personally do not like them but that's just me. If you can find one it would probably be worth a try. Earlier in my husbands disease I went for counseling but found that only marginally helpful because even in the case of counselors, if you haven't lived through this you can't understand it. I just got a lot of the "you need to make time for yourself" advice. Hello! Can't do that.

I'm sorry that I don't have any good practical advice for you, but I do have sympathy and understanding. Hopefully someone else on the board will have the wisdom and experience that I lack to help you. I just want to let you know that you are heard and cared for.

By karolinakitty On 2009.12.31 07:19
Overwhelmed .... you certainly are overwhelmed .... In taking the "tough love" approach you must let mom know that you can not do all this. You have a family to take care of also, PLUS you need to seek other employment. The cost of running her is probably draining your pockets and while indeed you love her and want to take care of her there are limits. I had to do this myself with my mother. She fell, fractured ribs, couldn't, no wouldn't, do therapy, i had to spend 90% of my time taking care of her, in and out of bathroom, cooking, doing all the fun stuff. I had to back off and convince her she needed help, I couldn't do it any more.
I made a pro/con sheet, one thing i do to help with decisions. When you take a look at how much you are spending (include your time) with mom, running her here and there, taking time at the Independent place to see she has her meds, and making sure she's eating right. It may be more cost efficient to have her deemed ALF.
Now some of you might think this is cold but it's only practical. While we love our parents,grandparents whatever, there is only so much one person can do in one given day. We all have the stress factors of PD, both patient and caregiver, we want to provide the best of care, we want to do it all and sometimes we just can't. So guilt sets in and we start all over again.
Maybe limit mom to a visit with her husband every 3 days or twice a week, this would help her understand that you need to do other things. She may get mad and say mean things, but we all deal with that too.
One big thing for you ... check your local mental health clinic. They have psychologists who will see you at a reduced rate and maybe for this anxiety filled time you could use some Xanax or something like that to help you through. Not only is mom's health up there on the list but yours must be up there too. If you do not keep yourself healthy, you will be no good to anyone else.
Forgive me if this sounds cold. I don't mean for it to be that way. I'm taking an unbiased approach, trying to not let my caregiver heart get in the way.
While my PDr and I have agreed, i would never put him in a care home of anykind, we also have an agreement that i would get as much outside help so i won't kill myself taking care of him. We've both been caregivers before in our lives and have learned a few things about stress and health during that time period. While my Pdr was caregiver for his mom, who had terminal cancer,he was going through a nasty divorce also. His mother died at home in his arms and shortly there after he had a breakdown. He knows the reality of it all and I the same after caring for Mom and grandma. I think sometimes we are so focused on the caregiving part we forget about caring for ourselves.
There is no support group near us, I rely a great deal on my googling and reading posts by annwood, Mary, Al and Bob here, their wisdom has helped me a lot.

By LOHENGR1N On 2009.12.31 08:45
overwhelmed, There may be groups or organizations that can help. If you go to the top of this page, click on home. Then on top of that page click on resources, scroll about 3/4's of the way down and click on benefitscheckup. It is a wonderful site to accesses to find resources close to your home. Also checkout the local council of aging. They may either give free rides or know of someplace that does.

Falls with Parkinson's are common while alarming and dangerous there's not much one can do about them. I have a friend who falls about 30 times a day if He's up trying to do things. I've seen Him fall 5 times on a trip to the kitchen from living room (about 25 feet.) This is a frustrating cruel disease. Please keep posting we're here to help as we can, you're not alone. Take care, best of luck and hang in there.

By overwhelmedinFL On 2009.12.31 09:37
About assistance!!! We are working on getting VA aids and attendance for my parents to assist with cost of the ALF. It is a long process and we are in the middle of it. Once we get our 23 page application together and submitted they will pay us retro back to application date even if the process takes 9-12 months.

It will be somewhere of 1000-1600 a month I think. that will be a BIG help. of our issues is mom does have an IRA that is invested in an annuity. Bear with me in explaining this as I am not a financial advisor...The principal is guaranteed as long as mom does not withdrawal more than a certain percentage each year. If she goes over that percentage she loses the principal protection and must realize the TRUE balance which is of course way down due to market conditions in the last 5 years.

We are so unsure of how long we will be caring for her 2 years or 12 years that we are paranoid to lose that principal amount!! Since everytime I ask any doctors or read anywhere...."every case is different" siblings and I are very concerned about making it last. We are concerned if we burn through it that then the assistance we recieve will require moving to a different facility or something..maybe not the nicest place and we don't want that.

I always expected to have mom at my home to care for her. Problem is we never expected her husband to still be alive when she needed help. He is a bit of a curmudgeon (although can be the sweetest man) and having them both would not work for us or my parents. He never lived with or married my mom until all her kids (6) were grown and gone gone gone... They dated 15 years before getting married and have been married for 10. Sorry I digress.

So.. he is the official human version of the Sherman tank and again just keeps on going. His trips to rehabs and nursing homes make him grumpy and he likes my mom at his side. She likes being at his side. They love each other SOOOO much. They will risk both falling in order to get a kiss. It's a bit much I tell you!!!

As you can tell, my last 4 hours of sleep has done me good. My husband is my rock and took care of me while I cried. I am very fortunate to have good friends and mostly good family (a few brothers that are blissfully ignorant).

Thank you all for your words of kindness and letting me vent on here.

By overwhelmedinFL On 2009.12.31 14:53
I know falls with PD are inevitable but I get most frustrated at my mom's inability to focus or realize the danger she puts herself in. Is THIS part of PD?

Even the therapists mention that her focus is terrible...For example..walking down the hall at ALF with her ustep..she will hear a door close behind her (like 10 apartments away) and she lets go of her walker and turns around.

If she drops ANYTHING she will bend over to pick it up. This drives me nuts. I have bought her grabber things... they are hooked around her apartment in reach. She never uses them.

My dad uses aids and coping skills VERY VERY well. He keeps a calendar of people he talks to, how he feels each day etc

Mom is almost like you would expect someone to be if they were changed overnight. Like she had no time to realize her new limitations, but she has (not a ton of time as this has happened quickly) but still?

Also eating... she is litterally falling asleep and she is trying to drink HOT HOT coffee? From the time the cup leaves the table to when it gets near her face she closes her eyes and bobs her head. She get's frustrated when I try to help her and I understand.

I don't want to sound like her mom... but it is hard to let her fail/ fall/ hurt herself.

By Emma On 2009.12.31 15:22
My husband does the same kinds of things. Sometimes I think he's oblivious and sometimes I think he's just spitting in the face of Parkinson's. Either way he is his own worst enemy. I hate "scolding" my husband but often times it feels like that's what I'm doing. When we had home health coming in they kept telling him that he was one fall away from a nursing home and he would just give them a cocky look and walk away without his walker as if to prove them wrong. I empathize with your frustration.

By LOHENGR1N On 2009.12.31 17:29
Let me try to make some sense of this for you. I think of the damage caused by Parkinson's Disease to our brains in relationship to the old fuse boxes from years ago. (they use circuit breakers now). You may remember turning on a light and either it didn't work or it "blew" the fuse? Well in our brains the impulses are carried through nerves which end in synapses or a gap between them. In the brain a neurotransmitter dopamine fills this gap. Our brains don't make enough dopamine to fill the gaps so we take carba l-dopa to supplement what our brains no longer produce. Our fuses to complete the circuit or allow the message to transmit. Now simple automatic everyday things can be compromised by lack of or too much dopamine (too much is like putting a penny in the fuse box it works but can over load the circuit). As we go along in daily living it is hard to judge this level and realize our limitations many times on auto pilot it is too late as we stumble, bump into things or fall we're realizing we shouldn't have done that but it's too late then. It's the same with reaching out to pick up a coffee. Everything we do over our life we've learned to for lack of a better term take for granted. The subconscious adjustments formed in the brain to activate just the right muscles to reach out the messages from the eye to the brain to the arms of the distance to extend to touch the cup. The command for the fingers to curl around the handle grasp and lift it. All this runs smoothly in "normal" people however Parkinson's delays, stops or interferes with so many systems it is hard to know if when or where trouble will pop up for Us. We're not our own worst enemy, we're not spitting in the face of Parkinson's we're not oblivious. We fall we bend over out of habit and a lifetime of doing these "natural" things we've done all our life before Parkinson's. Some people are a thinking things out person others are a reacting or doing things person. Some are organized and planers with skills to chart and use aids or think ahead for what if's. Some have always been the react to the problem or situation first people. So asking if this is part of P.D. yes sadly it is. Over time We all learn some limitations however with Parkinson's being degenerative or progressive it is a ever changing process of trying to adjust and recognize new limitations.

This is a tough disease and little understood by many therapist, thankfully this is changing and more of them are beginning to see and understand it's many nuances.

I hope this helps when you're questioning the whys of when we get into trouble and gives some sense to what or why it seems we're not thinking or paying attention to you or using some tools we're now supposed to be using. Take care, best of luck and hang in there.

By Emma On 2009.12.31 21:21
Lohengrin, I found your post interesting and informative. I believe that you are correct on many points. I would however, like to point out, ever so gently, that not all PD patients are the same or have the same experiences or reactions to the disease, just as not all caregivers are the same, have the same experiences or reactions. There is also more to a person, and their behavior, than the physical disease. Just as you pointed out that we all have ways of doing things, we all have personalities as well and personalities don't go away just because someone has a disease. And personality clearly figures into behavior. In my husbands case he was a contrary curmudgeonly person (and I say that lovingly) with a "spit in the face attitude" toward many things before he got Parkinsons and he's still that way now. There are times when yes, the circuits are overloaded or not working properly and then there are times when people are just being who they are. We all have a tendency to say "it's not him, it's the disease". Most of the time that's true, but sometimes it really is him being him. Also, when a person has dementia, which you obviously don't, but my husband does (diagnosed by two doctors and a neuropsychologist), sometimes they are, in fact, oblivious.

Sorry if I sound crabby. It's been a rough day.

Happy New Year to you and thank you for the input. I really do learn a lot from you.

By LOHENGR1N On 2009.12.31 22:38
Emma, No problem, Thanks for pointing that fact out. I try to generalize in my answers. I didn't mean to come across as specifically as it seems I did. I apologize, You're right if We were headstrong before Parkinson's then we'll be headstrong with Parkinson's. I meant only to explain the short circuit in our wiring, not to blame all upon the disease. Thanks for the reminder......I need that from time to time. No need to apologize you've the right to be crabby dealing with a Parkey all day. I think We all know where you're coming from, rough days are too plentiful around here. I hope the rest of Your evening and night goes better. Happy New Year to you also. Take care, best of luck and hang in there. Sincerely Al.

By annwood On 2009.12.31 22:40
You are correct, Emma. The pre disease personality does effect the PD with dementia behavior. That being said I believe that the inability to control certain aspects of the personality is greatly magnified by the dementia.

Regarding the original post. You do have a great deal going on with your mother and step father. They have to be told that life has changed, there are many factors involved that prevent things from always going their way. I think that you need to make it clear to your mother that she will not be able to spend every day with him in the hospital. Having been a hospital nurse I can tell you that the last thing the staff needs is your mother there. They won't like it but too bad.

The falls and failure to comply with the walker, meds, food, etc are just part of this disease. I found that it does absolutely no good for you to remind them - they don't retain the info and you just make yourself crazy. You have to accept the fact that she will fall despite all of your efforts to prevent it.

It sounds as if there will come a time when your mother will no longer qualify for Independent Living but will need to be placed on a skilled unit. The facility will make that decision for you because they will not want to be responsible if she injures herself. The financial impact of that needs to be addressed by you and your siblings before it becomes a reality. I also wonder if any of them are helping you with the day to day care?

I think there is so much going on right now that you are probably very overwhelmed. Try to simplify your life as much as possible. There is no way that you can continue being at your mother's beck and call. She is in a facility and let them do something. She will become more and more child like as this disease progresses and you need to set some limits.

Decide what is best for you, your husband and children.

By overwhelmedinFL On 2010.01.01 09:33
Your responses mean a bunch. I can see where part of the ways she acts was before PD...or before her more onset of PD and I can see where some of it might just be the PD.

What makes this harder is that I see SOOO much of myself in her. Also when I took her to the movement group and we went through family history they were very intrigued because we of course have it in our family but also because in 05 I was diagnosed with a mild case of narcolepsy. The doctor and the resident went off in medical talk about the overlaps of the two diseases and I talked about possible misdiagnosis... it scared me. I am getting all my ducks in a row with medical, life and LTC insurance before I even think about going down a road of seeing a doctor. Probably just paranoid but my dad passed young with insufficient life insurance. LTC is cost prohibitive once you are diagnosed with something and currently I am unemployed and don't want to end up in a spot where I have a gap of coverage and get diagnosed with anything... I like to plan and cover my bases. Regardless, the fear of having PD and my wonderful husband having to deal with me is a big load. I told him I want him to be able to hire help for me and that there be enough $$$ to make sure he gets a beautiful nurse!! He of course tells me I am silly.

I can see now why stepdad is more organized/methodical/prepared and she is not.

It makes me crazy, but I am going to make a pledge to TRY to not say things to her when she is being unsafe. I know she does it when I am away so why scold the times when we are together. I think the scolding has started to put a wedge in our very close relationship.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you