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Topic Caregiver to Toddler and MIL with Parkinsons Go to previous topic Go to next topic Go to higher level

By pickles On 2013.09.22 02:46
Hi Folks,

I'm new to the forum. I've been reading a bit but haven't found much on the topic of caring for a young child AND a relative with Parkinson's. I realize some adult children have kids but I'm not seeing a lot of mention of these younger kids and their experiences.

I ask because my mother-in-law recently came to live with us. My husband is about 15 years older than I am and we recently had a child. I'm a full-time stay at home caregiver to my child and now my MIL. MIL was diagnosed about 8 years ago after experiencing bradykinesia. She has limited mobility and walks with a rollator. I prepare meals and drive her places, mainly. She has some cognitive issues and dementia but it is an inconsistent problem. I've only recently become acquainted with her issues of hallucinations. One day not too long ago she admitted to seeing my child's face differently in addition to seeing peoples faces as animals. We had a disturbing roughhousing incident not too long ago that has led me to question my child's safety around her and it makes me very sad. MIL is also saying odd and inappropriate comments about race and weight that I address as they occur but she keeps at it. Since witnessing all of this I am unable to let my child wander out of my sight in the home or relax whenever my MIL is near her.

We are in the process of consulting with a psychiatrist and a neurologist but will have to wait a couple more weeks. She is at the top of her dose for Carbidopa/levodopa and from what I gather one doctor says she shouldn't be on so much. In the meantime I do not have my child and MIL together long and when they are together I am immediately within reach. I am exhausted. I am afraid all the time about my child being exposed to her pills or more difficult to explain or aggressive behavior.

I'm questioning this commitment now because I'm maxed out now and I'm afraid that it is only going to get worse. My husband has said her leaving the home is not an option but I can't see anyone getting the kind of care they need when it is shared between two extremely different kinds of environmental needs. I'm afraid for my child and a G rated atmosphere but most of the time my MIL comes off as a kitten and I seem like some overreacting lunatic when trying to explain situations to my husband who is ALWAYS working.

Advice? Experience to share? Please.

By LOHENGR1N On 2013.09.22 08:49
Hi pickles, welcome to the forum. I'd try going to the American Parkinson's Disease Association web site. they have a link to the Young onset center. While it is mostly for families with a parent who has PD and young children your situation is close. They can give you info, help with addressing concierns and such. Hope this helps. Again welcome to the forum. Take care, best of luck and hang in there

By lurkingforacure On 2013.09.22 14:27
I'm living this and it's very hard. My husband was dx'd about a year and a half after our youngest was born. It is very hard to try to explain to a child why THEY have to pick up their toys, put their dirty clothes in the hamper, bring their glass to the sink, etc.....when their dad does none of that. Just as you are teaching them to pick up after themselves....the PWP is getting worse and worse at that, it's very frustrating for the caregiver and very confusing to the child.

As well, my husband gets mad when the kids make noise, rough-house, whatever. Kids are noisy and I can't always make them go sit in a corner and quietly read! We don't have friends over for our children anymore, because they may be too loud when my husband decides he wants to take a nap, or they may want to watch a movie and he has decided he wants to watch something else (only one TV)...you get the idea. If you have a separate garage apt. or some separate part of the house where your MIL is staying, this may not be an issue for you.

Then there is the issue of spending time with your child. If your husband is always working now...how will he spend the little time he is at home when things get worse? You have a child that needs their father, and that father has his mother with PD living with you all. I would talk openly, now, about the time issues that will arise (if they haven't already) and discuss how you all can handle them. If he is flat refusing to even discuss the possibility of his mom not living with you, that makes it very difficult: you may find yourself as the mother of your child faced with having to choose between staying in a house that is not good for your child or leaving. Talking about this now, with both you and your husband learning as much as you can about PD and the stages, will help you make the best decisions you can for both your child and his mom.

This forum has more information about what it's like to live and care for a PWP than any other forum I have seen. I would read as much as possible about what is facing your family, and talk with your husband about your concerns.

By moonswife On 2013.09.22 22:44
Pickles,
We, too, have a mixed generation family. We had built a home with 6 bedrooms. MY mother lived with us for 11 years. Mostly good ones, some with broken bones. My kids went on to college, and it was just my husband and I and he was diagnosed with essential tremor, later with PD. My daughters husband took his life, so she returned at 39 with an 18 month old, and joined Grandpa and Grandma.
Grandpa Mike has had DBS in 2010, returned to work, finally PD led him to disability SS at 63. We gave up our business. I still work full time, and care for Mike, and often for the 3 year old in the evenings. YES, you do have to tell them not to leave trip hazards. And sometimes you cannot do fun stuff on schedule. But cuddling is good for both generations. Best of luck to you and stay on this site. The advise and tips you learn are invaluable.

By daisy On 2013.09.23 12:07
Pickles. It's obvious that you care deeply about your MIL and are trying to find a compassionate solution for everyone. I can only give you my perspective, based on my own situation. My DH became ill when my youngest was just 3yrs and he was DX a year later. For the last few years, I feel like a single mother to 2 children, one growing and developing, becoming less demanding, the other; my Dh, becoming less able and consequently more demanding. It's mentally and physically exhausting.

The PWP will require immediate attention and you will find yourself putting them first, as you would a crying child, because they cannot help it. Your own child will learn very early to accommodate your MIL's illness. Fun times may be delayed, postponed or cancelled altogether. Ultimately, you and you child will lose out and your MIL will still be sick (that's my experience)

If you are struggling with your situation now, I would strongly advise you to MAKE your husband aware that something will have to give. If he is not prepared to allow his mother to leave the family home, is there any way some home care could be arranged so that the caregiving burden is shared? Or maybe a day care centre she could attend on a regular basis?

Firstly and most importantly, there is every chance that her behaviour could be helped with an adjustment in her meds.

I'm sure that others will have some more helpful suggestions for you. I hope it works out for you.

By carman96 On 2013.09.23 21:46
Do you take your MIL to the doctor? You need to tell the Dr. about these behaviors. I agree with Daisy that a medication adjustment might be called for.
Also the idea of an adult day care or something would be good. You need to let your husband know that you cannot do it all. I haven't had to deal with young ones around my husband, and I think that all of you that have children at home and a PWP should be applauded for all you do! You people are awesome!
Hugs to all of you!

By pickles On 2013.09.24 01:30
Thank you for all of your replies.

We visited one neuro doc today and will see a psychiatrist next week. I've had conversations with them all. Current idea now is to reduce the Requip slowly because they think it might be too much with Sinemet. After describing some of the incidents to the docs it was said by all that it is not good to mix dementia and children and that given our situation we need to look into additional outside care. I spoke with my husband today and we both don't like the idea of her not being with us for the good days but we need some daytime help for me right now. He's open to day care if she consents.

Today was a fairly normal day ... just errands and meal prep and some basic help figuring misc electronic equipment and guiding to the right door, etc. No behavioral issues or conflict. If everyday was like today I could manage ... unfortunately it is unpredictable.

I'm young and most of my friends parents are quite healthy with no experience so I'm kind of scratching my head on how to bring up the topic of adult day care. I don't even know what is covered or where to begin financially with that option. I've got to hit the internet.

This might be a different thread topic but at what point does the caregiver take over medication dosing. I feel odd about her having so many issues I worry that the meds aren't happening when they should or possibly too much. When she visited I would help her but now she won't ask and when I ask she doesn't want me to have anything to do with it. Possibly because I was so pill phobic with my child. I'd find pills at the table or see them coming out of her pocket and it took a lot to keep these pills locked up so in the process she kind of kicked me out of managing the drugs, too. This worries me as well.

By carman96 On 2013.09.24 10:36
Pickles, you must find a way to take over the medications. I don't blame you for being worried about your child. Also, you don't know if your MIL is taking the prescribed dosage. They sell locking pill boxes that only let you take the dose at the time that is set. They are quite expensive, though.
Look up your local area agency on aging. They can give you advice and I just applied for 8 hours of respite a month that they pay for. Also, check your local senior center. They usually have activities, lunches, etc. They also should have some information on getting help.
I hope you get the help you need, and soon. Sounds like you need it. Good luck to you.

By LOHENGR1N On 2013.09.24 15:43
Pickles, It's a delicate path to walk keeping a loved one safe and helping them remain somewhat independent. I would caution you not to step in and take over everything. Parkinson's Disease is a long drawn out disease. It's progression can last for years and years. Many who rush to aide in everything burnout and start to resent the fact the now have to do things that before at the start they didn't mind because it made it easier for their loved one but now the loved one can't do themselves. That said you have to be sure your child is safe also. Being over medicated can also lead to delirium and confusion often misdiagnosed as dementia. Perhaps She will think more clearly when the medicine is lowered. It's a confusing and muddled mess, you're in a good place here to get help and tips to ease the burden if just a little. Keep posting and everyone here will try to help when and how they can. Take care, best of luck and hang in there.

By pickles On 2013.09.26 01:27
Thank you again for your continued replies. The neurologist gave her a journal to fill out to let her know what times she was taking the medication and how well they worked. It is confusing to her and I'm wondering if this is a test to see if she can manage. I like the idea of a locking pill dispenser and have seen them but perhaps that could be the next step that she could manage at least partly. I would be relieved to know daily if she remembered or rejected a medication because I'm beginning to wonder. She is also diabetic and taking metformin. There are days when she skips lunch or won't eat what I make for dinner and the following day is usually a negative one. But yes I see it is a very delicate path. I am a huge believer in letting her do her stuff for as long as she can I just worry that I won't know when she can't unless there is a big mistake that might hurt her.

Thanks again. <3

By Mary556 On 2013.09.26 11:32
Good Day, Pickles. Best wishes for you and your family. Happy that you found a good neurologist to care for your MIL and adjust her meds. My PWP Mom had some upsetting side effects that stopped when one of her drugs was discontinued; hope that may be true for yours. I share your concern about her pills and the safety of your child around them. It is important for elderly persons to maintain independence as much as possible, but also to keep them safe, that they do not overdose or miss doses due to confusion. Delicate balance, yes indeed. My elderly mother is disoriented to times of day and what actual day it is. She has oversized containers for her pills, one for each day of the week with compartments for morning, noon, evening and bedtime. What is working best for us: I fill Mom's pill boxes once a week and keep them on a shelf out of her reach, except the container for the current day which we keep on the kitchen table. Mom remembers her schedule and checks on her pills throughout the day to make sure she has taken them. So she still has some degree of control. In your situation, maybe there is a shelf in your kitchen that your MIL could access but is out of your baby's reach? If she could have a little space of her own to keep her pills (and diabetic candy or some little treat she likes), she might feel more comfortable and organized. When she is not looking you could discreetly doublecheck to see if she is taking her meds correctly.

It can be very difficult for a parent to have their role reversed, when an adult child takes over and starts "telling him/her what to do". There is an art to communication; that part has been somewhat difficult for me to learn. It sounds like your MIL is a very gentle and sweet person by nature. If she is having occasional outbursts, it could be that she is trying very hard not to be demanding and keeps things bottled up inside to avoid offending anyone. But sometimes she may become so frustrated and upset that uncharacteristic unpleasantness comes spilling out. She does not mean to hurt you, but you are the person who is closest to her now. She is trusting you with her true feelings (not in the best way, but still). At a time when she is calm, maybe it would help to talk with her one-on-one to try to get her to open up about anything that may be on her mind, what worries or frustrations she might have and try to problem-solve together. It is stressful for anyone to give up their familiar place and move into someone else's home. (as it is stressful for the ones whose home she moves into.) She could feel like she is a fifth wheel who has nothing to contribute. Every day ask her if she feels up to doing a little job for you... set silverware on the table, fold the washcloths and hand towels, switch the pillowcases on laundry day, sing to your baby, tell family stories, give you a hug when you could use an extra hug.... She needs to remember who she is and to remember that she is loved.

It is very important that you get enough rest for yourself. You sound exhausted. For the the short term, maybe you could get someone to help you with housework one afternoon a week? For myself, I was starting to feel overwhelmed because I've not been able to keep up with my kitchen chores and yard work the last couple of months. Recently I asked a good friend to help me for an hour/week, washing dishes or raking leaves. She is so kind and did not want to take any payment, but we could have none of that. It has only been two weeks, but already I'm feeling much less stress... getting more sleep and feeling more strong and focused. If you do not know of anyone who could help you in a similar way, maybe there is a local church organization or group of students in your area who do service projects to help others. There are good people who want to lend a hand once they know you are there. It is very important that you get enough rest and do not hesitate to ask for help when you could use it. You are a very capable person but everyone has limits. You need to take good care of yourself to be able to take good care of your loved ones. God bless you and yours.

By jcoff012 On 2013.09.26 13:18
Pickles, my PWP and I are grandparents and daytime caregivers to our now 4 year old grandson, Nigel. I have been so since he was three months old. My husband has been helping for the last two years.

We have emotional troubles with the daily PD issues..."Grandpa, why do you shake?" "Grandpa, I WANT to play now; will YOU play with me?" etc..We go online for help, come here, and often find little videos they can watch together about PD.

We keep all meds up in a cabinet in the kitchen, so he cannot get to them. We discovered early on that he was a climber, so out of sight, out of mind. We also asked the pharmacy to be SURE all meds are in child safety containers...odd that they aren't automatically placed in them, but some are not.

The main thing we have had to do for our grandson and my husband's peace of mind, is to make sure we keep a fresh stock of bandaids, ice compresses in the freezer, his and my husband's doctors' numbers by each phone (we found out that having it next to our bed didn't help when we had a REAL emergency a few months ago), and we use the iPhone alarm to make sure my husband takes his pills at the correct times...Our grandson understands what the alarm means and tells him, "It's pill time, Grandpa." LOL

Also, we keep a backpack in the car and in the truck with all meds, all lists of meds, and a card that says "I have Parkinson's". I also got him a MedicAlert bracelet that he tags on his luggage when we travel.

Good luck with your journey. Jane

By LOHENGR1N On 2013.09.26 16:25
Jane, Just being a butinski here, you raise a good point about the pill bottles and children around. Some pharmacy's dispense non-childproof or disable the childproofing on the bottles because of the "Parkinson's Disease is an disease of the elderly" so making it easier to open the medicine. But if Children are around Childproof or store up out of reach.

By pickles On 2013.09.26 23:48
Wow. I can't believe the support from this thread. I'm still taking it all in and only have a few minutes to respond but thank you so much.

I do want to share that we have a variety of child proof devices. Our first pediatrician said prescription drugs need to be in a locked cabinet so we got the ones from Ikea although I don't recommend them for the bathroom because they chip and rust. We also have also ordered these key locking zipper bags for her purse medication. My kid is also at that age where she knows exactly when to get into something when we aren't looking. My mother-in-law's purse on the floor has been an issue. In fact I think that is the most common source of unintended overdosing because people have a reasonable expectation that their medication is safe in a personal item like a jacket pocket or a purse. Kids don't always think that way, unfortunately. It pains me to hear about these kind of incidents as they are very serious in the event they do occur.

We've had a lot of medication safety issues despite our modifications. Tonight I went in to assist her with something and found a pill on her nightstand so the bedroom is off limits for the little one. I'm working on a way to get a locking cabinet in an area where she can sit down and organize them. I'm thinking of a little station that she can manage but it needs to be easier because i'm finding pills in her desk drawer, nightstand and on the floor. She forgets she dropped them and they stay there.

Thank you again for all of your support. I have felt so alone. My husband is significantly older than I am and my friends are unfamiliar with what I'm experiencing. It is nice to have new folks to turn to. <3


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