Parkinsons with Dementia

Updated on April 06, 2010
L.G. asks from Carrollton, TX
8 answers

Hi Moms,

My dad recently had to move in with me and my 6 yr old son. He was living on his own three states away until he had his first true Dementia spell. I could not bare the thought of him in a home and begged for my family to let him come stay with me. Being the youngest of five and a single mom, it took alot of begging. I have always been the closest to my dad and made sure to call him at least twice a week. I assumed the memory loss was due to old age.
Anyway my question is, does anyone have some insight they can give me with living with someone who has Dementia? He is in the very beginning stages and on two different memory medications. The doctor put him on a strict diet of no sugar or carbs because his cholesterol was very high. He will not eat anything but sugar free bread, crackers and sugar free cookies/puddings. These cannot be that good for him. Is this normal for them to crave sugar/carbs like this? He wasn't like this before the spell. I have taken out almost everything but my son still must have some food. He will sneak things once I turn my back or step outside. Before the diet he was going through a box of Little Debbies in 2-3 days and claiming he wasn't eating them. I promise it wasn't my son, as my son is allergic to them. I have taken him to the store to pick out what he wants. This food goes bad and then he asks me why I keep buying food and throwing it away. Last month I spent over 1,000 on food for three people trying to figure out what he will and wont eat. I have also labeled everything with "dad" that he can eat. Any tips? Also any tips in general with how to deal with his memory loss? Thanks Moms!

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A.C.

answers from Cincinnati on

Have you taken him to professionals that specialize in dementia/Parkinson’s (? the Dementia center in Dallas (http://www.medicinenet.com/dementia/dallas-tx_city.htm)

They maybe able to offer you help, ideas, and see if there are people who can help you. If you don't have a social worker I would recommend (as Denise P did) to get one - they can be a wonderful resource and assist you with what you need.

Good luck!

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M.C.

answers from Detroit on

Hi L.G.,

Sorry if this is long and rambling, but there is so much on this topic that I hope is helpful to you:

You are a wonderful daughter:) My heart goes out to you and your dad. I've been dealing with dementia for the past 10 years. My dad died having Alzheimer's for 7 years and my mom was diagnosed with vascular dementia three years ago, so I know exactly what you are going through. As far as the food issue goes, you control what you buy and therefore, what options he has to eat in your house. He probably doesn't remember what he's picking out at the store, so only buy him a few items. People who have dementia do not remember what they eat from one moment to the next nor do they remember when they last ate. Does your dad see a neurologist or a geriatric specialist? These two types of doctors have a greater knowledge of dementia than just a regular MD and can also prescribe the best drugs for the type of dementia that your dad has. Also, there are drugs on the market that can slow the progression of certain dementias. My mom takes Exelon which has slowed her vascular dementia. Of course, there are side effects such as weight gain and/or an increase in appetite, just to name a few. Aside from the eating issues, I strongly suggest that you make sure that your name is on your father's bank accounts so that you can sign his checks for bills, get a power of attorney so that you can control his estate, and make sure he has a will--all while he is still in the early stages of dementia and can appoint you. It's a wise idea to contact a respected attorney who handles estates, particularly one who is familiar with nursing home laws in your state. If your dad no longer has the mental capacity to appoint you, then you would have to go to court to get guardianship and/or conservatorship over him. Over time, dementia worsens. Every person is different and no doctor can tell you when your dad's dementia will worsen. I know with Alzheimer's it can go from 2 years to 20 years. So, if your dad is still lucid enough to make decisions and has most of his cognitive abilities, I encourage you (and your family) to make these decisions asap. I know you mentioned that you do not want your dad to be placed in a facility, but honestly, you have to keep that option open for your health and that of your daughter. Take the time to find out what facilities are available should the time come. Caring for a person with dementia can be overwhelming. Now is the time for you and your family need to determine where dad will go should you ever get to the point where you can no longer care for him. As a single mom myself when I took care of my dad, there were days when I couldn't get out of bed because it was so hard. Additionally, there are services available such as Visiting Angels or Comfortkeepers, so that you can get a break or take a vacation--check them out:) Last year, I had to place my mom last year in an assisted living facility because I could no longer care for her needs. It was tough, but she's happy there. Sometimes moving them into a facility is hard for us as caregivers, but wonderful for them because they meet new people, do activities, and someone is there 24/7 to care for their needs--so, keep that in mind:) As far as tips on living with dementia, it depends really on the behavior he exhibits. For instance, if your dad gets up and night and wanders, then you need to put locks on the doors or get an alarm system in case he leaves the house. One of the saddest things with dementia is that the person loses track of day/night, the time, day of the week, month, season. They have a tendency to repeat things, fidget, or become fixated on certain things. Now that my mom is in a facility, the staff informs me that she hates showering, puts dirty clothes back in the drawers, and will refuse to change her clothes for days. It's so sad because that is not my mom, but that's life. It's like they become a different person and you lose a little bit of them everyday. If you need anyone to chat with on this subject or any advice, please send me a private message.

I hope this helps some:)

M.

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D.P.

answers from Pittsburgh on

L.G.,
It might be beneficial fro you to speak with the case/social worker at your dad's doctor's office. I'm sure they can point you in the right direction for information and resources about dementia. He is most likely not remembering what he has or has not eaten and that's why it's important that you make sure he IS eating...there should be support groups for you in your area as well. Best of luck and I admire you for taking care of your dad! That's really special. God bless.

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L.M.

answers from Dallas on

I'm very sorry for you. My dear grandmother died last September 13 due to many years of Parkinson and the last several years experienced dementia....mild at first and then severe. My grandmother lived with my mother up until 3 years ago. It became so difficult that she had to be moved into an assisted living home. My mom struggled so much with this decision. But, actually, she loved it. If you find a good one, (clean & caring) then it can be a great situation. Just remember, the dementia shows up as paranoia and anger. Grandma was always accusing my mom & dad taking her money or treating her badly. She would tell all her friends at church and say it like she was completely lucid. So people actually believed her....it was very hard. Finally, we had to take away all her medication and just give it to her when it was needed. She was having horrible hallucinations. It was bad. I'm hoping that when the time comes, you'll have peace in your heart and God will lead you to the right home for your father.

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S.H.

answers from Honolulu on

Find a support group for caregivers, and/or for Dementia care giving.
See a Nutritionist or be referred to one by his Doctor. Each case varies according to the individual patient's condition/needs.

Care-giving for a parent, with health problems, is like taking care of a child, or harder. Thus, it is very important to join a support group and take an active role in his Doctor appointments and understanding fully, his condition.

Dementia is also a safety issue... so you have to look at it that way as well. They can't take care of themselves totally. And they get forgetful.... long term or short term memory as well. So learn all you can, about the condition.... AND since it is linked to his Parkinsons as well.

You need professional guidance... a lay-person, cannot guess at it or their needs. My Father-in-law had Parkinsons... he was on medication, had the tremors etc. He needed help with BASIC hygiene as well and bathing and using the bathroom.

Can you get a home health aide to help? Does he have insurance for that? It will help if you can get that kind of help... and being that you are a Single parent, with a child of your own. Make sure, that your son is not lost in the shuffle... it can be hard on the child too... to understand all of this and the patients needs.

Since you are a Single Mom... can't your family ALL pitch in for costs? And for helping? You should not have to shoulder the costs of it all by yourself... this is THEIR Dad too.....
and it is huge undertaking.

My Dad was ill for a long time too, and I and my family were care-givers for him. It also entails taking them to the Doctor regularly for appointments and check-ups.. All of which requires you taking time off (from work) to take them to the Doctor etc.

And... if your Dad has dementia/Parkinsons... can he even be left at home by himself? That is another issue... and a safety issue as well. What if he turns on the stove... and forgets to turn it off? These are very real concerns, with an ill parent and/or dementia and Parkinsons.
They cannot be entirely responsible.... for themselves, or in a homes daily details. And they often need Supervision...

Join a support group... ask the Doctor for a Nutritionist... and ask your Family for any physical help or financial costs to ALL pitch in for the care of your Dad.

KNOW... that it will progress. His condition will worsen... and you will need help. Tell your family. Medical conditions like this do not go away. It is a condition... that requires daily upkeep and MONITORING of their condition.

If you cannot handle the care of your Dad... have a "Plan B." And maybe he may need to go back to a care home.
You NEED to discuss all of this with your family/siblings. THEY should also be coming to your home to help and just to visit him.

All the best
Susan

L.B.

answers from New York on

A good book for a caregiver of a parent with dementia is the 36 Hour Day, The book will have alot of tips on how to help your Dad. Call around the different hospitals in your area and see if they have an eldercare resource center. As your dad's memory loss progresses he will need more supervision, you may need to have a companion stay with him while you are at work. Has your dad been evaluated at a Memory Care Center or Alzheimer Resource Center? Is his dementia related to his Parkinson's Disease? How advanced is your Dad's Pardinsons? I definately think that you need support from outside services, contact a social worker who deals with helping elderly people stay in the community. These people specialize in helping families help their elderly parents stay at home as long as possible. We did this with my mother when she was diagnosed with Alzheimer's Disease.

You mention that the doctor wants your father to stay away from sugar and carbs because your Dad has high cholesterol? This does not make sense to me. Sugar and Carbs do not affect cholesterol, fat affects cholesterol. Sugar and Carbs are related to diabetes? Does your Dad have Diabetes? that may explain his cravings. A good cookbook is The American Heart Association cookbooks. These cookbooks are heart friendly and list carb, fat and calorie content.

I would suggest that you make another appointment with your Fathers doctor to find out exactly what you need to know about his health, diet and medications.

You are doing a great thing for your Dad.
L.

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K.F.

answers from Dallas on

You have a long road ahead of you. It won't be easy, but you are a good daughter to do it! My grandmother has dementia and so many of the things mentioned below apply. She tends to get angry and paranoid, accusing others of taking her things, treating her badly, etc. She lived with my mother for a year before I had her moved into an Assisted Living Facility and that seemed to make all the difference in the world. The situation was so similar to what you described above - she ate poorly and refused to cooperate, she was angry, depressed,paranoid etc.

One MAJOR thing that has helped her was when she moved to AL she was no longer "helpless". When she moved in with my mom she could no longer drive and my mom tried to do everything for her (out of love and concern). She didn't feel like she had a purpose. Then, when she moved, her neighbor down the hall needed a lot of physical help and she was able to provide it - that gave her a sense of purpose, which gave her something to live for again. If you can find something that allows him to help you out I think it would go a long way with his well-being.

Also, be careful of your feelings b/c you are now the adult and he is the child, and it has the possibility of getting "ugly". He still loves you, he just doesn't understand what he is doing. And make sure you keep your siblings in the loop so they understand what is going on but make sure they come and see for themselves because it's hard to beleive sometimes. My grandmother was the sweetest, most patient woman in the world. If I didn't see it, i'd have a hard time beleiving some of what she does and how she acts. But be careful as well - dealing with an ill parent does things to people you wouldn't expect - my family did not rally well so be prepared to cut your family some slack if necessary. Especially if they decide they disagree with something you might do.

One major thing I've learned is that when she gets confused or forgets, I don't "I told you already". I treat it like it's no big deal or maybe I forgot to tell her and just tell her again. Otherwise she feels shamed and it doesn't do anyone any good. The confusion seems to be the worst right when she wakes up (nap or from a night's sleep). Don't try to change his "system" of doing things b/c he likely beyond learning a new system - the memory capacity for that is gone. I use the same calendar system that my gma has used for years and do my best to make sure things are written there for her, then I follow up several times verbally.

And the consistency of the AL has done her more good than anything else. She eats at the same time every day, etc so her body can kind of go thru the motions automatically and it is easier for her to remember.

Good luck and hugs. Email if you have any questions or need to talk!!

T.C.

answers from Albuquerque on

Hi LG,
I *just* attended a seminar for therapeutic approaches to dementia taught by an occupational therapist who has been practicing longer than I've been alive (and I ain't no spring chicken, I'll tell you - LOL). I hope I can get you some direct support:

His name is Lanny Butler, MS, OTR. His website is www.iatbdementiacare.com and his direct e-mail (personal - yes he answers e-mails from real people every day!) is [email protected]____.com

His book is "My Past is Now My Future." It's a quick read, available on his website, and offers *practical* approaches to helping a family member with dementia live life to the fullest.

I would e-mail him your exact question above, see what he suggests, try it out. Then maybe order and read his book if his suggestions help you.

I would also recommend an evaluation from a local home healthcare provider.

Good luck, and remember: a life with dementia can very well be a joyful one to the very end!
t

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