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Topic Coughing while eating Go to previous topic Go to next topic Go to higher level

By gonnagobald On 2009.10.07 16:56
Hello all! Hope everyone is doing well.

I have a question. I'm the sole caregiver to my 89 yr old grandmother and she is really losing alot of weight. In two months, she lost 10 lbs. Another two months later, she has lost almost another 10 lbs. At her last weigh in, she weighed at 87 fully dressed and midday. I'm guessing she's closer to maybe 83 or 84 lbs in reality. I was finally able to get her to use her walker which she refused to in the past and also now we are using the depends which has turned into a godsend for me, cleaning wise. Her Dr prescribed her a really high dosage of potassium and actually from what the pharmacist said, it's the very highest dose and only comes in liquid form. We are mixing it with koolaide as it tastes sooo terrible. She was really lethargic and really not replying very well to any questions and wanting to sleep alot.
Here are my questions:
1. While grandma eats, she coughs ALOT. She comonly spits out food while eating due to the coughing. Why? Does this mean the PD is progressing? My grandma is on no other meds as she refusese the sinemet.

2. The weight loss. She is losing weight rather fast, at least in my opinion she is. She has toast with butter and peanut butter and a cup of tea every morning, somehting for lunch and then she doesnt eat dinner because she says she isnt hungry. I don't force her to eat. She doestn care for the ensure or any of the other nutritional drinks. Is it common for PD patients to lose their appetite?

3. In my opinion, she is very close to being bedridden. I am going to college full time and have a husband and three young boys. Her Dr did write a letter to grandma's attorney to tell him that she could no longer take care of her financial and emotional and basic needs and that I needed the signed copy of the DPOA. The attorneys office never gave us a signed copy, only the 'unsigned copy'......
I have told grandma that I feel I need some help as I am getting more and more overwhelemed. She refuses to have anyone here that I know personally even though they are trained and licensed by the state as CNA's. I think it's because she wants someone outside 'the circle' that she can complain to. Which is fine, but if it's someone I know, then at least I know that I have not put my grandma in a position to be hurt physically or even to be stolen from. How do i handle this? And grandma refuses to pay but I told her that I believe that being the DPOA that I can go ahead and go above her and pay them anyways because its for HER care. Am I right?

4. Also I have been trying to figure out what stage grandma is in also. Is there any way to get a round about idea on this? Her Dr only said that once the coughing sets in, that it's a bit of a downhill spiral from there.

I know this is long winded and I apologize but i'm frustrated and at my wits end.

Thank you

By Pearly4 On 2009.10.07 18:52
So many other people will have so much more to say (and I mean that in a good way) -- so many things you'll need to know and have to deal with.

Basically I can only say, yes, yes and yes. Coughing while eating is most likely a sign of having swallowing difficulties which can be related to a progression of the Parkinsons'. It may, in fact, lead to pneumonia.

Weight loss too, for whatever reason, can very much so be a sign of progression of the disease (although it could be many other things).

Staging is hard -- google the Parkinson's stages and read some of it.

At her age and with this disease, it might be time to speak to her doctor about getting hospice involved -- they can provide the care and attention that she needs and the assistance that you need.

By LOHENGR1N On 2009.10.07 19:33
Hi gonnagobald, Welcome to the forum. Let's see if We can make sense of what's going on for you. (If you haven't read past posts, I'm Al, a patient. I was diagnosed in 1986, a few months before my 34th birthday.) The swallowing coughing problems are most likely caused by Parkinson's. As time goes on the disease affects our autonomic nervous system (controls involuntary activities). In the case of coughing/swallowing our lungs have a membrane or flap that closes when swallowing, when it doesn't function right little pieces of food or liquids can enter or try to enter the lungs which triggers coughing to expel them from the lungs. It sounds like this is Her problem. I've had these problems for years so try not to get frantic about it. The Hoehn and Yahr scale is the one most widely use for stages. However I myself don't put much stock in stages. With medication one can seemingly move for a time back from one stage to a earlier one. Plus as I say I could be in a late stage 5 of being hit by a bus and not know it.
Losing weight is common in P.D. and as We lose our sense of smell it affects the taste of foods also. You should try to get Her to use the sinemet again. It works for most people with Parkinson's disease and if She starts taking it the improvement may be astounding to you.
As to power of attorney matters I defer to the many caregivers here to advise you on that.
Again try to get the sinemet on board, maybe you can get her to try it for a few weeks to see how she does. You've got a great group of people here to help anyway they can. Ask questions all you want, read up on P.D. (education is essential) someone here will have an answer or trick they've learned to help you. Feel free to email me at Loengr1n@aol.com if you'd like. Take care, best of luck and hang in there.

By gonnagobald On 2009.10.07 19:48
Thank you both for your advice. We (myself, the dr and my husband) have tried to get her to stay on the sinemet but grandma told her last dr that they just did her more harm than good. She does seem to suffer more from the side effects more than anything. She hallucinates on them and also can barely walk, she becomes extremely dizzy and unstable.

The one dr told me that PD patients lose weight because of all the shaking, like it's a constant excercies, and i wasnt sure what to think about it, but I guess it kind of makes sense.

I think her taste buds have changed, I have made her breakfast (the toast with butter and peanut butter) the same way for I dont know how long and she told em the other day that she wanted me to stop putting honey on her toast. I told her that i dont, but she refused to believe me even after showig her that the PB was the same kind she has always used. I am having a hard time with setting boundaries allthough I am getting better at it. She refuses to let me push her in a wheelchair when wwe go to the store, so I had to tell her that unless she would us it, I couldnt take her. Am I being mean here? She doesnt walk very well and stumbles. I know it wouldnt take much for her to break a hip or somehting if she fell.
She has fallen twice in the last few months and when she fell, her skin is sooo thin that even though she didnt hit her hand/arm on anything, her skin literally ripped right open. It's just so thin that when i took her to the hospital, stitches were not an option at all. Bandaids even rip her skin. It's like she's a porcelain doll.

Her demeanor is pretty nasty sometimes. She prefers to take it all out on me but is as sweet as can be to my husband and swears he walks on water. Why? I know there is no easy answer for this, but I'm the one who cleans her when she has a bowel accident, I wash her face, i giver her showers, i make her meals, etc. why am I getting the short end of the stick in the appreciation department? She's not mentally gone, she has her moments for sure, but why is she soooo damn hateful towards only me? without me, she would have to be in a home. It's hard not to take it personally, i swear i try. But it doesnt make it any easier.

By Pearly4 On 2009.10.07 20:18
My husband and I took in my mother and provided all her care for the last five years of her life. Her condition at death was not nearly as bad as some here have had to deal with but I was the recipient of all her hate for that five years. At one time she even called 911 and reported she was being held against her will and her medication withheld. Unfounded of course, and later she even admitted she wasn't confused and didn't believe what what she was saying, she just wanted to get back at me.

In time, with a lot of social worker intervention and some medication (she was started on Aricept) she began to realize her anger was toward the disease - the disease held her captive, the disease was taking everything from her, not me. We had a few months of relative peace before she died in her sleep. The Aricept helped because she suffered from dementia - it's very likely your grandmother does also.

I think a lot of it was the dementia and some of it was not only anger at the disease, but fear of what she saw leaving her. I couldn't/wouldn't/didn't make it stop -- therefore I was held accountable. The Aricept restored some of her function for the short time she was on it -- a lot of her anger dissipated at the same time although this was also during her social worker time.

So much going on -- I can relate to so much of what you're dealing with. Don't deny yourself the anger and hurt you feel, but don't dwell on it -- believe me, in the end you too will see that the person you loved disappeared a long time ago and this person you care for is basically nothing more than her body and a collection of symptoms of her disease. Or, at least, that's how I view things from my perspective.

Don't begrudge her the relationship with your husband but work with him to use it to your advantage, if he'll permit it. I couldn't get her to do anything - he simply said "we're going/doing this thing" and she went. I couldn't say anything that was right from "good morning" to "nasty day, isn't it" -- he could persuade or convince her if he talked with her one on one for just a few minutes.

The side effects of the medications in the beginning can be pretty bad -- her tastes have most definitely changed, as has her sensory perceptions. My mother felt the floor was wet constantly -- it was only cold but you couldn't make her believe it. We simply wiped up the floor again and again or had her put on shoes and socks. She seemed to eat mostly ice cream and candy toward the end -- I'm sure in part she needed to simple energy boost it provided, and Parkinson's patient do require more effort to simply breath than you and I, let alone move around.

Its a long, long, downhill journey and has very few bright moments. I believe, too, that caring for a spouse is so much different than caring for a parent or grandparent. Not harder, not worse, just different.

Good luck - ask whatever you want. Someone will answer. We aren't experts - we're just experienced!

By annwood On 2009.10.07 21:32
Hi, Welcome to our forum. You have already heard from two of our experts. Al keeps us on track from a patient's perspective and Pearly4, like me, has been through a lot of caregiving and lost our loved ones to this terrible disease. I think it is great that you are able to put all of this in a post! The thought of a husband, children, college and caregiving makes me tired to think of it. I commend you for all of this but also want you to stop every once in awhile and think about YOU.

Everything that Al and Pearly4 have told you is correct. Sometimes just knowing that others are going through the same thing helps. Until I found this forum I felt like Alice in Wonderland - nothing was adding up and I thought that I was the only person experiencing some of these problems. The people here got me through so many bad times and I will never forget that.

The coughing is PD related. Stick with soft foods and thickened liquids. I probably would discourage a swallowing test because it just opens up a new bag of worms - special diets, feeding tubes, etc.

At 89 yrs your grandmother is most likely demonstrating signs of dementia. This would probably be a problem even if she didn't have PD. Given that, you now have a 3rd child and this one is about 3 or 4 yrs old. Think of your own children at that age and how you would handle them - that is the way you have to start treating your grandmother. If you look at it that way it explains much of her nasty behavior - tantrums, spitefulness, refusing to eat. You need to learn to be direct and specific in your demands of her. Don't wait for her to agree with you because she won't. Don't try to reason with her because she either won't understand or she will forget. This is all part of the disease. For you, this will be difficult -we call it role reversal and it is hard. Life will be much easier when you can do that. We will help you through the process, if you want.

Directing anger towards the caregiver is very "natural". With my husband I was in tears much of the time because he would be so hateful. That continued until he died. The last thing he said was "get that woman away from me". By that time I had come to the understanding that this was PD and not my husband - he had been gone for three years. One of the things a caregiver experiences is an ongoing grieving process because you lose your loved one in slow increments. As Pearly4 said by the time they die there is nothing left of the person you once knew. I also believe that they realize what is happening and the are frightened. They realize that you are there caring for them and they feel it is "safe" to attack you because you love them.

I suggest you consider Hospice at this point. It does not mean she is dying tomorrow but rather that she has an incurable, progressive disease. There is no time limit for Hospice - many people have had them for years. They do re evaluate the patient every 6 months (maybe it was 4) and if the criteria are still there they extend the services. Hospice will provide all of the PD meds at no charge, medical equipment, diapers and pads, a weekly evaluation by a nurse in your home and an aide twice a week to bathe and shampoo. They take care of all the physicians orders, blood work, etc. The most important thing they did for me was to explain what was going on and what to expect. It sounds as if your grandmother's physician is well aware of all that is going on and I am sure he would be receptive to Hospice. It seems to be easier to call Hospice yourself and they will do an assessment. If she is a candidate they will contact the physician and get everything approved. Medicare covers all of the costs.

I have rambled again. I hope that you will stay with us and that we have given you some useful information.

By annwood On 2009.10.07 21:39
And I forgot to mention that your grandmother will throw a fit when you bring in Hospice or anyone else - do it anyway. What can she do about it and you have POA. I don't know about your children but mine used to throw a tantrum when I left them with a babysitter but were fine as soon as I left. Remember your grandmother is a child at this point.

In time Sinemet does lose it's effectiveness and there is a maximun dose. If the physician is aware of the situation I woudl say don't worry about it. I found towards the end it made no difference if my husband took the meds or not.

By susger8 On 2009.10.08 07:55
Just wanted to add one thing to all the wise comments already made -- Definitely get a valid, signed copy of the POA. You will absolutely need it.

Sue

By Mary On 2009.10.08 11:23
gonnagobald - welcome! This forum is an amazing source of information and support. I do not know what I would do without it. I cared for my father for 14 months and recently moved him to a Veterans Home. At the Veterans Home, they gave him a swallow test and determined he needed thickened liquids and pureed foods. The thickened liquids made it possible for Dad to drink without choking, coughing, having nasal drip or watery eyes. The pureed foods are helping Dad to eat better, but he still does not eat enough. Dad's taste buds have definitely changed. Things he used to love to eat, he doesn't now, even chocolate. Dad will also gag easily on foods that do not taste good to him. Watching Dad struggle with this disease has been the hardest thing I've ever had to deal with. I pray a lot. Hugs and blessings to you, Mary

By SandwichMe On 2009.10.14 20:15
Without wanting to post a lengthy response...

I'd suggest calling for a hospice consult. They can assist you with feeding issues, medication issues and the dementia/agitation that will or has already begun.

They will be an amazing support and in most cases paid for by medicare.

You need them and she needs them.

By lynn On 2009.10.14 21:11
Our speech therapist gave us a list of foods my husband could eat since his swallowing is impaired. Note that peanut butter and cream cheese are big no no's because they are too sticky and tick.

By susger8 On 2009.10.15 08:56
Yes, with older people who have had the disease for a long time, the medications lose their effectiveness. There just aren't enough dopamine neurons left in the brain for the meds to work on.

Edited to add: This is in response to gonnagobald's comment about Sinemet not being effective any more -- I don't know why it's out of order.

Sue

By gonnagobald On 2009.10.07 20:55
I forgot to also add that her dr felt that the Sinemet wasnt working for her anymore.


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