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.

You are right in that I have a full plate. With both of them, it is likely that it will get fuller! I'm so thankful for the home health help, and my dad's health. Longevity is very strong on both sides. My maternal grandparents lived to 93 and 95, and my paternal grandmother passed just before her 101st birthday. Thank you for your advice!

I have dealt with Parkinson's since 2004 and Lewy Body Dementia since 2008. I agree with what is said above but would like to add everyonen is different. They claim my wife has LBD but I suspect it is PDD. That becasue she had the dementia sit in 4 years after the PD. But,Like the member said above it doesn't matter what kind. I moved to a single level home becasue it is my wife I am taking care of adn we both are 73. We were 69 when we moved becasue I knew it wasn't getting any easier. We had steps in the old house and I knew it was going to prove a problem becasue BR's and shower were upstairs. Yes you have eto watch the medications and let them know right away any changes in attitute etc just like you are experiencing now. They changed a lot of my wife's medication which were proving to make her anxious, confused etc even down to the statins for CHL. She now only takes Sinemet 25/100 twice a day, any more caused wild hallucinations, Namenda XR 28mg which I have not seen any improvement with it, and Exelon patch 4.6 which you have to be careful with. any higher she retained Urine and had so many UTI's until I got them to agree to drop the level. God Bless you and Good Luck Remember, every day and every person is different.

Oh yes, I have done a lot of research and it does not cause Alzheimers but if the doctor's diagnosis is wrong, which a lot of them are, it could be Alzheimers and not Parkinson's. It kind of sounds like it but medications can cause a lot fo what youare talking about.

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. :)

I understand. My mom has had parkinson's disease and what I think is early stage dementia even though one doctor says yes, while the others say no,I don' understand. I just put my mom in yet another nursing facility because she just was having more issues. Its a tough call when it comes to selling the house and moving parents. My dad is deceased and now I am selling the house after 40 years her living there. It is not else and always a tough call. My mom had really bad hallucinations with her parkinson's meds so we continue to do some changing around and seeing how it goes. It hasnt been easy by any means and well I know how you feel. Hang in there

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 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.

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.

My BIL (age 69) has PD and just last year started showing signs of dementia which has rapidly increased. It sounds as if your mother is getting excellent care and supervision at home. I agree that you do not need to take her in to your house. Rug elimination, smoke detectors in each bedroom and hallway, safety rails, a shower chair and higher toilets will make life easier and safer for both of them and don't cost a lot. Other higher price modifications (door widening, tile or laminate, bath room modifications) can be added later. Start small and add more as needed or desired.
Like chiefmac, I was able to move from our two story to a one story fixer-upper that I modified for handicapped as part of the remodel. This was 3 years before my husband needed a wheelchair, but you need to plan ahead and be realistic. Also, chiefmac, mentioned misdiagnoses. A PET is considered the definitive diagnostic tool but it costs more than a MRI or CT and is therefore often not done. Three years into his dementia I suspected misdiagnosis and my husband had a PET. He had FTD not AD.

Dear Nana2eleven: Sorry to hear about your mother. If you haven't already done so, I suggest that you go out on www.lbda.org to read about Lewy Body Dementia. Parkinson's dementia is often misdiagnosed as PDD or Alzheumers, when actually it's Lewy Body Dementia, which is treated far differently than other dementias. In fact some meds that are given to treat symptoms of other dementias can be fatal for Lewy Body Denentia patients. Since you already have your plate very full, I recommend that you move your parents to a facility that has assisted living and a memory care unit. Some of these facilities also have a skilled nursing arm. Dementia is twrrible. It wipes from a person's mind things that they've known and done all theirs lives, such as the activities of daily living. And if they have any personality quirks, you can count on the dementia intensifying them. So my advice to you is to either hire 24/7 care for your mom or to move them both into the type of facility I mentioned above. The sooner you do this the better.

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]

You need to brace yourself because this information is not going to be easy,but you need to know It may be a little different but the truth. My mother has Parkinson and had that way before the dementia she is 86. We was told last year about the dementia it was a few months later then she started to advance a little more with this. I was my mother caretaker after coming home from Rehab boy was I suprised When she got home she wanted to do everything like she was normal. Got nasty with me because I knew she couldn't do certain things she didn't want to follow doctor order because she was not stable to walk on her on and would get up without help being there I was afraid she was going to break a hip or something. She became depressed and wanted things her way nothing I could do to make her happy I cooked what she wanted after about a month she didn't want to eat nothing. when she came home from rehab she still had a G-tube in her belly cause she didn't eat at all there. She even call the police on me and my brother mostly me but what she told them was the truth she was just mad because of losing her independence. We had Home health the whole nine yards she was just nasty. In the third month she all of sudden she was going to leave the house but we had to stop her from that it was a fight of course she was hitting me and my brother she would kick. She cussed us out and my mother didn't use that kind of talk previously. 3 weeks after this all of a sudden she couldn't walk anymore she began to shuffle a couple step and then give out I could believe how the change came on just one day there it was. My mother would want a certain thing to eat and would eat the same thing everyday for a month then it would be something else the same way. She started having bladder infection and this would make her even more confused she would dream and see things that wasn't there baby, rabbits, people, bugs and then she wasn't even at home she be somewhere else but she was right in her own home we had to take picture and mirror off walk to keep her from hurting her self move lamp by the bed she would knock it on the floor. she had to have bed rails on her bed she try to get out of bed and couldn't walk. She started getting up and becoming more confuse during the night so my rest was broken and it got to the place that I knew I needed extra help cause I couldn't stay up all day and night. It was hard for me and I cry and prayed a many day the struggle became hard for me. My mother need to start being turn because she would lay to long in the same position when she wasn't combative She didn't want me to wake her to turn her then she got a couple of bed sores. Now by this time the APS has to know about her refusing the proper care since she had call the police. This was to keep me from being charged with abuse of a senior. They talk with her and then they were on my side and told me that it was good that they came in and seen what she was doing to her self cause I could have being charged if I didn't bring them in. By the seven months my mother became very ill and had to go to ER and from that point on she went back to rehab and from rehab to long term care. This wasn't easy letting go because I wish things could have been different but I knew I did all I could do by trying to take care of her. She was in rehab for about a month and she had become adjusted to were she was and the long term skill place was were she was at they just tranfer her to another side and she didn't have to leave the building and since she was ok were she was the transition wasn't as hard for her. Of course she try to make me feel guilty and told me I was throwing her away but I knew different I had nothing to do with her leaving home this time nor did I have anything to do with her going to rehab and it was what it was she just was venting but the next day she was ok and still today she now had a kind spirit and has adjusted they take good care of her I talk with her daily and go to see her at least 2 or 3 times a week and I'm at peace know she in good hands 24 hours a day. So yes your Father is getting wore out it to much for him and he will began to get depressed He need lot of help so let him know that you want to help him and lighten the load. It was hard for me I know it about to get the best of him. If you don't you going to have 2 to look after and double trouble. Free him up now and allow him to just love her and comfort her take the load off now.

I was overwhelmed this morning when I saw all these posts, and read your advice and experiences! Thank you so much! I have no one to talk to here who really, truly understands. My sweet hubby is so kind and loving...and tries to help hold me together. My only daughter has her hands full with 5 children (ranging from 15 yrs to 16 mos.), and my only brother lives in Ohio. You have all given me things to consider, things to change, and encouragement. Thank you, thank you, thank you! I'm hoping to NOT spend this day crying....

DRBLESSED, I'm doing all I can do to relieve my dad of some of the stress. BUT, he is a very independent man, who pretty much does things his way. He's 90, but still drives, has a tremendous sense of humor, loves building things and builds LOTS of birdhouses just because he can. I still have to respect his space, his home and his wishes. Mom is "almost" normal some days, during the day. Night is the hard time for her. Doctor is working on her meds, trying to fine tune them. Her state of mind is no where near what you described your mother's to be. You've really been through it! Right now the future is unknown, and as someone here said, I have to take care of today and not worry yet about what is to come. (Probably the best advice yet!) Last night was a fairly good night for her, although he didn't sleep a lot. I suspect they both sleep more than they realize, but it is so fragmented that they don't feel rested. Good days, bad days...and I'll just have to see what the future days bring. From what I've researched, PDD comes in all forms and fashions. Time will tell, I guess. I have many more responsibilities that I won't go into here, one of them being I have partial responsibility of 2 of my grandchildren. I can't neglect them. Ever. I live in a rather unique situation, and some days I'm stretched in what feels like 1,000 directions. Thank you for sharing your story with me. It sounds like you have done what is best for your mom. God bless you, and thanks again!

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!

Unfortunately no one knows what to expect with anything and everyone is different. My dad has had PD since 09. I took care of mom who passed from breast cancer and then right into helping dad. I am that person who does all 3 shifts heading to burnout, but am getting the vna in to assist because let's face it, we can't do it all, but I still try. Dad lately has a harder time walking with his walker and at times we use the wheelchair, but if he has a good day we move as much as he can. He has had hallucinations over the past two years and I have become a master of knowing what his pointing means or when he can't find the right words. Lately he has issues with his blood pressure and an echo showed what the MD describes as a stiff heart from lack of his ability to move much and him weighing more than twice what I weigh doesn't help in lots of ways. I see you were prescribed a neuropathy cream, which has not been suggested by his neuro, hence we have an appt with a new one that hopefully will be more proactive. We also now have to go to a cardiologist and I am scared beyond belief right now. Everyday is different and I don't know what to expect next so I understand the helpless feeling of the unknown and of what is to happen in my future. I think dementia may be starting but he's not confused and not falling anymore. I may be nuts but I am trying to keep him home as that is his wish. Not sure when a complete team will be needed for him because who knows how fast things progress. Everyday is different. Sorry you are going through this, but you have found the right forum for support and suggestions. Everyone on here is great and helpful, they have helped me greatly with my situation. I am learning from all you that are at different stages then my dad is right now. Sorry I am not much help, but wanted to respond to let you know people are listening. You will have been of help to me when dad gets worse because I read everyone's situation and always learn something. Hang in there and take care of yourself.

All above answers are good. I worked in Geriatric long term facility for 32 years. Parkinson's disease does have its own dementia. But dementia is dementia and the out come is the same. First, I worry about your father and the toll this will take on him. It is we'll know the caregiver can die first because emotionally and physically it is too much to handle. You are trying to take a lot on your plate. You are a wife, mother and grandmother and you already have an obligation to two grandchildren. Question is to you want to be a caregiver or a daughter. If assist living for you father with a nursing home may be a good idea. Your mother is at nursing home level of care and it is just going to get worse. She will get more demented and her physical care will get heavier. In a nursing home she would get the appropriate care and even if your father still drives. He could visit her. Also, you could visit your mother and be a daughter. Caregiver is demanding 24/7 job which could go on for years. Both parents would benefit having a doctor who is a geriatrician. There are many reasons for dementia and having a good work up is a benefit. Making medication changes slowly is crucial. Medication can contribute to confusion. I hope the neurologist has your mother taking her Sinemet before she gets out of bed in the morning, 5 to 6 am and the second dose at 4pm any later can keep them up at night. You are very lucky to have your parents this long. Your mother is too much of a danger at home to herself. Just 1 fall can cause a rapid decline. She could fall in a nursing home too. But, overall she would be safe and there are services that could keep her functioning longer. I am 52 and both my parents are gone. My father died when I was 16. My mother had vascular dementia for 12 years and MDS for 10 years. I moved in to care for my mother the last 8 years of her life. I worked up to the last 13 months of her life. I had a work injury which turned into a disability. But, my mother's dementia progressively got worse over the years. My husband was home during the day when she was at her best. I also had a young daughter who was in aftercare. After work I would exercise for an hour, pick up my daughter. I had to be home at 5pm as my mother was a sundowner. I did have a girl come in 3 times a week to bathe her, change her sheets and clean her room. I stopped working June 30, 2010. I was also my mother's Health Care Proxy and I knew her dementia and MDS as is Parkinson's disease are progressive diagnoses. I did not want my mother to suffer. She was comfort care only. No heroic measures. It took 2 years to get my sibling to the table with the physicians. We where all in agreement. I noticed my mother to rapidly decline the fall of 2010. January 2011 she took a bad fall. She went to the hospital and had sutures and staples on top of her head. Also, she had a blood transfusion which I would never allowed. My husband went in the ambulance with her as I tracked down my family. My mother was admitted to the trauma unit. By the second day, I decided to bring her home with Hospice. The following day we had her hospital bed and equipment which we set up in the living room and I ordered a bed to be next to her.she came home on day 4. I hired her PCA 40 hrs a week. Hospice will give you 16 hours a week. You are assigned a nurse and social worker. Over a period of 6 months she got weaker and weaker. Hospice supplied comfort medication. My mother was dying from her MDS chronic bone marrow failure. She wasn't making enough red blood cells. My family was fortunate she knew us up till her death on July 17, 2011. She was kept comfortable. But, I guess it is all about what you can live with. It is almost 3 years later. I have no regrets. Both my parents died in their own home and left feet first out their front door. I wish you the best of luck. Whatever you choose. But, be well informed first.

I expect that the doctor may have explained more about PDD to your father, but that doesn't mean you got the information. Parkinson's Disease Dementia and Dementia with Lewy Bodies are essentially the same disease. If the Parkinson symptoms come more than a year before the dementia it is called PDD, and if the dementia comes first or shortly after the Parkinson's symptoms it is called DLB. Together these diseases are referred to as Lewy Body Dementias. As another poster has pointed out, an excellent site for information is the Lewy Body Dementia Asssociation's website, LBDA.org

Lewy Bodies are spots of alpha-synuclein protein in the brain. They are not detectable by any current imaging methods and at this time can only be confirmed after death by examining brain tissue. These protein deposits do not become the tangles associated with Alzheimer's. It is possible for a person to have more than one kind of dementia, but Lewy Body Dementia is a completely separate disease from Alzheimer's.

My husband had probable Dementia with Lewy Bodies for 10 years, dying at age 86. The presence of the bodies was confirmed by autopsy.

Here are some of the key differences from the more well-known ALZ:

1. Memory problems may not be the primary dementia problem. Executive functioning, decision-making, judgment, and logic may all be impaired.
2. Memory is also affected and short-term memory may be much worse than long-term. Often the problem in inability to take new material in. I thought my husband was failing to pay attention, and his doctors confirmed that -- his main problem was on the attentive side, not so much as retention. So things he took in years ago were clearer to him than what I told him yesterday. There is not typically a gradual progression backward through the years.
3. Failure to recognize people is much less common in LBD. My husband knew all of his family until the very end.
4. Wandering is seldom an issue with LBD.
5. Hallucinations come very early in the disease and are often what leads to diagnosis. Often the hallucinations and delusions are not disturbing to the patient. My husband's did not scare him. Dreams can seem to continue into waking moments.
6. Depth perception is often impacted. A door threshold may seen a tall obstacle, or a shiny floor may seem to be wet. My husband (a mechanical engineer) was often stumped about how to get into bed!
7. Behavior issues can be present. Partly because of this, the caregiver burden for LBD is considered by some research to be higher for this form of dementia.
8. Sleep disturbances can be a challenging feature of LBD.

I cared for my husband at home for this his 10-year journey. He died holding my hand in our bedroom. This is a bit unusal. All of the other caregivers in my local support group were eventually forced to place their loved one in a care center.

Do I think that you should take in one or the other of your parents? Maybe. Do I think you should uproot your family and give up the home you built? No. If you took in Mom, it would be very hard to say how long it would be before she needed a care center. Making a permanent change for what might be a short-term arrangement may not be the best thing to do.

I always thought that as long as my husband needed "assisted living" I could provide it right in our home, with some in-home help. Only if he needed nursing home level care would I be looking for placement. It seems to me that is how it is going for your mom now. Dad can provide "assisted living" now, and by the time he can't then Mom might really need the level of care three shifts of professionals can provide.

I'd suggest figuring out ways to support Dad in the assisted living role. If Mom's doctors can't come up with good ways to let Mom (and therefore Dad) to sleep through the night, consider bringing in a "sitter" to handle her through a night shift. Make sure that Dad has some respite! Perhaps you could spend one afternoon a week with Mom so that he could play golf or go fishing or whatever he likes. If a family member can't do this, hire it done. Give Dad the occasional weekend off. If Mom is up to it, perhaps a family member can take them both on outings, so Dad can enjoy it without figuring out how to take Mom to the bathroom or pushing her wheelchair, etc.

I sincerely think the best thing would be to support Dad in caring for Mom as long as that is feasible. At that point, Mom living with you might not be feasible, either.

Sincere best wishes to you all. Please update us on how this works out. We learn from each other ... and we also care about each other.

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!

Do you recall what the medication was that helped him sleep? She is so sensitive to so many meds!

Yes. It was Seroquel. It is not generally recommended for the elderly, but it is often prescribed by doctors who treat Lewy Body Dementias. Most of the people in my support group have tried it. For many it was successful. For others it was neutral, and for some it made things worse. That is true of pretty much everything tried for brain diseases. Each brain really is unique, and one drug does not work for everyone.

In our case, I learned not to give it to my husband until he was sitting on his bed in his pajamas. Its effect was very rapid. He really couldn't walk well after about 20 minutes. If he had to get up in a few hours he could walk to the bathroom just fine. But for those first couple of hours, he was better off in bed!

Some people took it a few times a day. That would never have worked for my husband, but it worked best for them.

This really is a trial-and-error process. We had good success with medications for most of hubby's symptoms so I personally think the process is worth it, if you have a doctor experienced in treating LBD, or very willing to research as each symptom comes up.

I can't promise that Seroquel will solve your Mom's problems, but I hope her doctor will be willing to work on finding something that will work. Always start on a small dose, try only ONE new drug at a time, monitor results closely, and gradually increase up to a therapeutic dose.

By the way, this is one of the drugs Hospice took my husband off at the end. We quickly reversed that decision when he once again was agitated through the night. Obviously that drug had continued to work the 9+ years he had been on it. It was the second drug he went on, because sleeping through the night was our most urgent early need.

Good morning, Jeanne....Seroquel is one that she was taken off of recently. She was having the night episodes with it , so I'm not sure if it was helping or not. She had been on Gabapentin for her legs, but that knocked her out...day and night. Also they were afraid it was compromising her already poor kidney function. Mom also has Afib and has a pacemaker, so meds are very tricky for her. I hope to talk more to her nurse today about it. I had her tweek her Xanax dosage last night ( Doctor said 1 or 2 at bedtime) since 1 did nothing and 2 made things worse. I had her take 1 and 1/4. Meds are very tricky...and just with her Parkinson's it's been trial and error since her diagnosis. Thanks for your help and advice. It is much appreciated! By the way, although many call me Nana, I also have a real name. It's Valinda :)

Valinda, what are her night episodes like? Does she appear to be acting out her dreams?

That's how it appears. When she wakes up, there is evidence of her doing things.(eating, moving things around , etc)

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.

Nana2eleven, try to track her night behavior in a lot of detail. Better yet, get her an appointment for a sleep study. RBD -- REM sleep Behavior Disorder -- is very common with Lewy bodies. With this sleep disturbance the sleeper has a consistent pattern to the dreams. They usually include being chased or threatened by a "bad guy" or bad animal, etc. When we dream our activity switch is turned to "off." But for people with RBD this temporary paralysis does not happen. When my husband swung his fist to fight off the bad guys he punched me hard in the chest. When he was running from the wild animal his legs were pumping like crazy under the covers. When he swung out to push his chaser away he threw himself out of bed! Obviously, this disorder can result in injuries to the person who has it and to bed partners! The wonderful news is that one little pill (Clonazepam) can completely eliminate this problem. When my husband took it before bedtime, no problem. If he forget one time, he acted out his dreams. If he took it the next night, back to calm sleeping. For him RBD came decades ahead of the dementia, but it can also come during the active dementia part of the syndrome.

I certainly can't say that is what your Mom is experiencing, but I think it would be very worthwhile to sign her up for a sleep study.

Did you get to talk to her nurse? How did that go?

PrettyGood it probably depends on where you are, perhaps even what country. I'm in Ontario, Canada. In the city the waiting list for a nursing home space can indeed be up to two years but in small towns and out in the country the wait time is less. I was able to place my mother in a wonderful NH in the country, an hour's drive from the city, in four weeks, however I was moving into the country myself and now live ten minutes from the NH so it worked well.

My family is in same situation. Took a long time
But my mom is finally on board with selling beach
Home and moving on to assisted care with our
Dad. Tomorrow she will change her mind and
Say we are making all decisions. For me, DISTRACTION is key. If she is upset tell her to tell you stories of her past. Focus on good things,
Such as, yes you are moving but we will do fun
Family trips. This will be a daily task since the
Dementia reminds me of movie 50 first dates.
Keep positive for them it makes it for a much
Better day!!!