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Topic Is it time for Hospice? Go to previous topic Go to next topic Go to higher level

By Sunbear On 2010.02.23 20:20
It has been so quiet on this site I thought it was time for me to tell you all where my hubby and I are today. We are 25 years into this disease and just when you think you have seen it all here comes another hurdle. We moved 600 miles 2 1/2 years ago to be near out only daughter and her family. I am so thankful that we made the move when we did. I don't think I would have the energy to pull it off today. It has been a great help to be near her and her husband and four adopted small children.

Here is where we are in the disease today: Incontinence increased, drooling increased, sleeping more, no longer able to dress, shower, shave, etc. withouht assistance, appetite declinig, weight loss, speech declining, sundowning increasing, etc. We have just finished a round of antibiotics for bronchitis. We are pretty much homebound now. Nighttimes are the worst. That is when Mr. Dementia strikes without warning. Last night hubby took everything out of the bathroom cabinets and thought he needed to work on the plumbing. He was worried about the deer in the trunk of the car. (He used to go deer hunting every Fall.) I finally convinced him that it could wait until morning. Thankfully, this morning, it was all forgotten.

Today, I called the VA to refill meds and was told they were not all refillable. I called Neurology Department and talked to Nurse Practitioner and ishe nformed me that "The Committee" would not approve both Aricept and Namenda which he has been taking for several years. She also decreased the Seroquel dosage. That was all I needed to hear today. I will talk to our neurologist tomorrow and if he wants him to remain on it, I will have to get it from our local pharmacy. (More expensive.)

We have appointment with Neurology in April and when I call tomorrow and try to schedule sooner to discuss possibly beginning some home care assistance or Hospice. I have no idea if we will qualify for Hospice or not. Getting kind of weary.

Thanks for letting me vent.

By Reflection On 2010.02.23 21:53
I'm so sorry that you are going through this. I appreciate your sharing your world with us - it helps us prepare for what is to come. I hope it gets easier for you - somehow.

By lostdaughter On 2010.02.23 22:35
Sunbear,

My mom is also about 25 years into her diagnosis and has 99% of the issues you describe. As you say, nights are really bad. Mom has a sitter during the day except on weekends. Of course, the sitter's job is to sit right under her and be at her beck and call. At night she is wide awake, roaming and doing things that make no sense. My sister has been trying to work and keep Mom safe at night but it's really caught up with her. I realized a long time ago that I can't function during the day after being up all night. Mom has been hospitalized 3 times in the past 6 weeks and there are constant dr. appointments. She's been in NICU for the past week due to complications after surgery she insisted on having last week. The past couple of years it's been one problem right after another and it wears caregivers to a frazzle.

Unfortunately, I have no answers for you. I just want you to know you aren't alone. It worries me that so many people reach this point and there seems to be so little help available for those who don't have the financial means to pay.

Bless you, Sunbear. You will be in my thoughts and prayers.

By annwood On 2010.02.23 23:00
Sunbear - So sorry that you are going through this. As you see, you are not alone but that may not be of much consolation to you. I personally found this site when my late husband was going through the problems you describe. I really don't know what I would have done without the wonderful people here. I was so isolated, nobody seemed to understand and I needed an outlet for my anger, fear, and exhaustion.

You definitely are ready for Hospice - they are terrific and can help with numerous things. They provide all of the PD related medications, including the antipsychotic drugs like Serequel at no cost to you. They will provide all medical supplies - pads, diapers, catheters, etc. You will never have to contact the physicians because they do it for you and they get very fast replies. There is an aide who comes to shave, bathe/shampoo the patient twice a week. They perform a weekly assessment by a RN and they are there for you and your questions. Even though I am a RN I was a mess with my husband's illness and acted like a nonmedical person. Hospice kept me on tract.

My recommendation is for you to contact your local Hospice and ask for a consult rather than ask the physician yourself. Too often the physician will say no to the caregiver but they generally don't question the recommendation of Hospice.

Remember that your husband's mental status is compromised at this point so you have to treat him as if he were a child. He doesn't get to make the rules and he can't dictate what happens. This is very hard but you must ask yourself what you would do if he was a 2yr old - that is what his mental status is comparable to now.

It has now been 2 yrs since my husband died but I remember the horrible times as if they were yesterday. You will make it through this but it will have changed you. I hope that you stay with us - we will help if we can.

By nan2 On 2010.02.23 23:01
Hospice told me that the initial referral comes from the doctor. Then they do an evaluation. For PD, at least in our area, Hospice has a very specific list of symptoms and disabilities that they look for in order to get involved. We're not involved yet with Hospice (or VA) but it sounds like it could be a simple transition.

By annwood On 2010.02.23 23:08
Like everything else I imagine each Hospice has their own policy. Here in Cincinnati we are fortunate to have three different Hospices. I recommend the not for profit ones if there is one in your area. I was able to do the initial appointment for the evaluation and they called the physician here. I think I would still contact them and see what their policy is. Given the advanced symptoms of yor husband, Sunbear, I have no doubt that he would be eligible. Good luck and keep us posted,

By Sunbear On 2010.02.24 11:31
Thanks to all of you who responded. I do feel better already. I am searching now for a local not-for-profit Hospice to contact and then I will go from there. At least now I feel like I am doing something and not just waiting for the roof to fall in on us. I will keep you posted. Thanks especially to Annwood who has already traveled the road I am on. I so appreciate her staying with us and sharing her insights.

By lbellomy On 2010.02.24 23:11
Sunbear, there is a generic for Aricept now so maybe the VA would approve that. They want to go the cheapest route possible. My husband was switched to galantamine (Razadyne) for that reason. Here is the link that talks about the generic aricept. http://community.lbda.org/forum/viewtopic.php?t=2054&highlight=donepezil+hydrochloride
Lorraine

By lostdaughter On 2010.02.24 23:15
Sunbear, Please keep us posted as you explore finding assistance. I'm glad you're feeling better about the situation. That "hopeless" feeling drags us down more than anything, I think. We're here for you.

By Emma On 2010.02.25 07:42
Sunbear, I understand how you are feeling. It's all so hard to deal with on both a physical and emotional level. My husband has many of the same issues you describe but perhaps not quite as bad. Just dealing with the day to day is bad enough but then having to figure out the financial aspect just makes it worse. In our case we have too much money/income to qualify for any kind of assistance but not enough to pay for everything ourselves, so financially at least we are in Parkinson's purgatory. Please do check with Hospice, there's always a chance that they can help you. We live in a small town and our Hospice has very strict guidelines for serving Parkinson's patients. So far we don't meet their criteria but that could be different where you live.

As I've said many times, the support and advice from the wonderful people on this board, who really do understand, is priceless.

By caregivermary On 2010.02.25 09:54
I just want to point out that hospice looks at all of the problems a patient has - not just the Parkinson's. The guidelines for hospice are not necessarily disease specific. Some hospice agencies understand Parkinson's and related issues much better than others. Finding the right hospice is very important. Generally, some Dr.'s are helpful in this and certainly social workers should be.


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