Mom has Parkinson's dementia, new here. What can I expect?

Dementia, whether is is Parkinsons, Lewy Body, Alzheimers or Vascular, share the common thread of memory loss, confusion and frustration. What is different is the medications used, so it's important to know what you have.
Also important are co-morbidities, like diabetes, heart failure, kidney or liver failure. All these play in to how the patient is treated. Taking your parents in when they need 24/7 leads to disaster more often than not. One person suddenly finds themselves working three shifts of care, with no days off. Your mom seems to have excellent care at home for now. You see how this wears your father down, it won't be any less stressful for you. Nor have you considered how this will affect your husband, children and grandchildren. You have enough on your plate right now. Add more and it will overflow. Avoid the temptation to let your hero cape unfurl, read more of the posts here. Read posts on alz.org and maybe even join a support group nearby? Don't have time? If you can't spare an hour once a month, you can't take anymore on. As for your house, you could block the stairs, but you would also have to lock the outside doors so she can't wander off. You would have to turn off the stove when you are not in the kitchen. You would have to replace the tub with a walk-in tub and make the faucets self-shutoff. Sharps would be locked up, breakables put away. Area rugs have to be removed. Handrails are needed in all walkways. An Occupational Therapist can give you a home inspection. There's a lot to be done to make it safe.

Hello,

First of all, God Bless you and please know you are not alone. I cared for my dad who had PD and LBD until he passed in 2009. It is a challenging task, but I found focusing on the good times has left me with fond and dear memories and I don't remember all of the challenges as much. Medications for the PD patient are a tricky thing to balance and manage and may need adjustments often. When you add in the challenge of dementia, it becomes even trickier. I found my dad did better with the minimal amount of medication, but as others have said, everyone is different. My dad did a lot of nightime wandering, often seeing intruders that weren't there. This was especially debilitating for my mom, so in addition to getting yourself some help, please don't overlook getting some respite time for your dad, too. My dad also experienced multiple UTI's, and in fact, it was a UTI that put him in the hospital the last time. He eventually passed of pneumonia, which may have been due to aspiration which is common with PD patients. The Northwest Parkinsons Association has some great information available as do many other websites. I think the best you can do is to read what you can find, focus on making each day as enjoyable and stress free as possible for your mom and dad, and take advantage of some of the wonderful assistance products out there. A swivel seat to get in and out of the car helped my dad a lot as did specialized, weighted utensils for eating. Caregiverproducts is a good resource.

Best wishes and remember to take care of you!

My mom, who is 94, also has Parkinson's Disease and is in early stage dementia. The neurologist took her off of part of her Parkinson's medicine and added one for memory. It has helped some. My mom is in a skilled Nursing Facility so I am able to recharge my batteries when needed. I have found that keeping her daily routine consistent is extremely helpful. I have been her cheerleader all the way through this process and when she doesn't want to do something she can do, I have learned to pick my battles (she is like my teenagers!). God will give you the strength to go forward. Don't focus so hard on what lays ahead but what you have and share now. :)

My Dad is 76 and was diagnosed with PD when he was 63. We moved him and his wife (86 years old) from CT to NC in December 2012. He also has dementia and I'm leaning towards Lewy Body but who knows? We have him on 1.5 Sinemet every 4 hours, 6 am, 10 am, 2 pm, 6 pm and 10 pm. This is a huge reduction from the amount he was getting when his wife was responsible for administering the meds. The hallucinations have stopped as have the constant falls and confusion. He also takes Amantadine, vitamin B12 at 6 am as well as a small 25mg Zoloft at 10 am and a 5 mg melatonin at night to help him sleep. The latest additions are the 2mg Neupro patch (very expensive) and Rivastigmime at 6 am and 6 pm. We have caregivers there from 10pm to 6 am to help him use the restroom at night (no meds so he's a little stiff at night) and caregivers return from 10 am to 2 pm. I go by their condo in a senior community nearly every day after work to be sure he gets his 6pm meds on time. Both of them go to a physical therapist on Tuesday morning. We have found that it is crucial to be on time and regular with the medications. No trips to the ER (from falls or UTI) in months now (he was going 2-3 times a month when they first moved here!) but we have regular care from a movement disorder specialist Neurologist at the UNC Parkinson's Center of Excellence in Chapel Hill. His doctor is going to get a large part of the credit for the significant improvement in both his mobility and his cognition. Dr. Roque is amazing and actually speaks to Dad instead of just to me. Dad walks 1-2 miles every day with a caregiver and absolutely loves it. We've even been able to get him to go swimming with the caregiver.

Every PD patient is unique and we've had to "try as we go" to find the combination of meds and exercise that keep Dad healthy and a functional family member. His wife is also suffering dementia and is very stubborn. It's been a lengthy process to help her realize that she needs help and she's going to get it, whether she likes it or not! Sounds as if you have been involved in the PD progression since the beginning which is a huge plus. If you haven't already, I recommend you locate a movement disorder specialist. I drive an extra hour for each visit but well worth it.Good luck and blessings to you. Enjoy your folks while you can. Every day is a blessing-even the challenging ones.

I wouldn't sell or uproot the living to care for those near death; that may sound cruel, but when it's put that way, you think about long term vs short term. I'm surprised a 90 year old can handle all this care taking; that is really old. My grandmother had Parkinson ever since I could remember, but was sharp as a tack. Both my parents got Dementia; my dad lived out his years in a home, but my mom was stubborn. Not only was she not going to care for him, but she ran off and bought another house, 5 hours from where I live and about 3 from my brother's home. Not only did we not know, but it forced my brother to uproot his young family [they had us later in life] to take care of mom, because she won't listen. I had rallied to help mom before, beat my head up against walls trying to speak logic, until my brother had to give up his home, career, life to do so...he eventually was done as well. The bottom line is, think long and hard about doing hero stuff, for those that only have a few years left, in the face of children that have a full life ahead. PS, my mom refused care, he gave up even though he had the patience of Job, and the doctors told her she had to listen or the decisions 'would be made for her'. We were never listened to, part of the dementia viewing us as little children. He sold his home of 20 years, had to start over, with kids in the house, and mom died alone in the hospital one year later because she was going to do what she pleased, despite everyone else. Think hard about that; 3 years from now, where will you see your family [I mean nuclear family of husband and kids under your roof]

My mother has had parkinsons for 15 years and dementia for 7 or 8 years. She's also had a number of strokes over the years and is in a nursing home, bed ridden and pretty much out of it.. From my experience your mother will decline until there's no option but to put her into a skilled nursing facility. I would strongly suggest, as the situation deteriorates, you consider getting your parents into an assisted living situation. Some facilities have an assisted living wing and a skilled care wing so when needed residents can just move to a greater level of care.

Do not even begin to consider selling your home and getting ready to care for them as the end result will be the same - assisted living or a skilled nursing facility - and by then your life and the lives of your family will be in ruins.

My father, 88 yrs. old, has Parkinson's and dementia too. He started with some mild dementia about 8 years ago - not seeing the need to wash his clothes, shave, shower, having trouble using his computer (he was very tech savvy), getting confused. About that time, he moved into a retirement community where he was in the independent living section, had his own apartment but got 2 meals per day. He loved it there, was not driving and seemed to function OK. He was very social and participated in almost every activity they offered. The last year or two, we had caregivers come in for him every morning. They would do his laundry, tidy his apartment, drive him to doctor's appointments, even to the YMCA for an exercise class for Parkinson's patients, and make sure he had lunch foods available. I was living in a different state - and he very much wanted to stay in Florida. He had lived there for almost 25 years. In Dec., he was found on the floor one morning and landed in the hospital. His dementia became severe and physically he was not steady enough to walk without supervision. We had a couple of very rough weeks in the hospital and finally I decided to move him close to me - very tough decision since he had a girlfriend - which complicated matters! But, she was not interested in taking care of him and they did not live together. He was in a rehab/skilled nursing for another 6 weeks in my area. I found it heartbreaking to leave him there each day when I visited and had to figure out a better situation for him. I found an assisted living group home for him and he has been there for 7 months now. It is a regular house and they can have up to 8 residents living there, but right now there are only 6. The two main caregivers are awesome, the home is very clean, the meals are home cooked and most importantly, it feels like a home and not an institution. He knows the caregivers well and they know him - not like the rehab where there seemed to be new staff all the time. This is very helpful for someone with dementia. I live 10 minutes away and visit it him all the time. My husband and I take him out to dinner and to our house for dinner every week. He is wheel chair bound pretty much. There are some disadvantages to the home, but they are out weighed by the advantages. His medications were adjusted when he was the hospital, but he does still have hallucinations and much more pronounced dementia. He can stand up and can use a walker with supervision, but mostly uses a wheelchair now. I think his quality of life is better than I ever would have thought it could be, given the way he was in the hospital in Dec. I think it is extremely difficult to care for someone who needs 24/7 care in your home. I don't have a first floor bath or bedroom, plus I think my father would feel very isolated staying at my house. This group home has been a good situation for my Dad. A coworker of mine suggested looking at group homes because her mother is in another one (which was more expensive than my father's). The owner of my father's group home has three houses - two houses do accept Medicaid, if money is an issue. Good luck to you and your decision. I know my father would not want me to give up my job, financial security for my retirement, and be a burden on my family, to take care of him. We have the best of both worlds where he is now.

I think you may have misunderstood my mother's condition. She was just dx'd with very early Parkinson's dementia. She has some very good days, but nights are hard for her. Right now, her nurse feels that most of her nighttime antics (Sundowner) is caused by her medication. They are trying to get her approved for the Neupro patch, so they can start reducing her Sinemet. She is no where near Nursing Home ready. She goes to ball games with my dad, they will go sit in the park, go visit great grands, go to Cracker Barrel on occasion, sit out and watch the birds nesting in all his birdhouses, etc. I don't know if she will get to a point of needing a NH. Right now, we're just trying to figure out how to get her anxiety at night under control. If she were put in a NH, my dad would very likely grieve himself to death, even though he could visit her everyday. Here's a rundown of her day today, she said last night wasn't terrible, she was up some, but not bad. Today she cleaned a little, did laundry, completely...down to folding and putting away. Her PT came, and the 3 of them went for a walk down the block, then she exercised for a while. They both napped, he scrambled them some eggs, and they were watching TV when I last spoke with her. She even cruised through Facebook for a while, looking at photos. Now tonight, she's starting to get anxious. I have a call in to her doctor to possibly tweek her meds a bit, and her nurse will be there tomorrow. I was able to stay home all day and clean my own house...which was joyful! So, I'm sorry if I wasn't clear...she can be very self sufficient at times. She showers on her own, only needing him to stand by and steady her as she steps out of the tub, is trying to remember how to crochet again, and loves having her great grands over. I know our future isn't very promising, but for now, she will remain at home, with her things, where she feels most comfortable, and less than 5 minutes from me and 2 minutes from my daughter...who is my "assistant". I can live with giving my mother the best care that I can, along with the rest of my "team". As things progress, we'll see what needs to be changed then. I certainly have gotten a lot of advice, and some criticism, and I do appreciate it all. This is a very new journey for our family, and we're doing what we can, and appreciating each day with both of them. Thank you!

Nana2eleven, I think you are going about this wonderfully!

Another characteristic of LBD or PDD that I forgot to mention but that you've already observed is very great fluctuations in level of cognition. Lewy Body is called a "roller coaster" dementia, with good days and bad days, even good hours and bad hours.

Like all progressive dementia, PDD gets worse over time. The general direction is down hill, but it is not a smooth progression. There are lots of ups and downs along the way.

My husband's nighttime disturbances were very severe. His doctors were able to solve that with a medication, greatly benefiting both of us. I hope that will be the outcome for your parents, too.

Your mother may remain in this "mild" stage of dementia for many years, and if the sleep time issues are resolved, and he continues to get support, she may be able to stay at home with Dad for many years ... maybe for the entire course of the disease.

Best wishes to the whole team!

ashlynne wrote ..."I would strongly suggest...getting your parents into an assisted living situation. Some facilities have an assisted living wing and a skilled care wing so when needed residents can just move to a greater level of care."
I would like to point out that yes, the AL may have a SNF or memory care section, BUT you can only move into it when there is an opening. If there is no opening when you need it, you might end up moving to another facility.
Just don't ASSUME that your wonderful AL with 10 units of ultra care, is going to have a unit ready for you, when you need it. This can be very difficult when it's a married couple and one has to move elsewhere.
The last AL I visited, was still being built and the hurried to finished off memory care unit (15 units) because it was already FULL. When we visited again, they made no mention of the unit, because there was already a 2-year wait list for just the memory care, and these were all outside people, so anybody who rented in the AL as of that date, would have to wait for the brand-new memory care unit's 2 year wait list to be gone thru, before they would have a spot, even thought they would have rented there for 2 yrs.