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Topic How do I cope with the shambles in the house? Go to previous topic Go to next topic Go to higher level

By poppadum On 2011.04.25 18:15
After many many hours of searching I found this forum which finally provided me with some much needed answers to my numerous questions.
I had no idea that there were numerous mental side effects from the various medicines for PD which were not mentioned on the labels enclosed with the medicines. Upon reading about them I realized that many were applicable to my husband. Although they explained a lot about his behaviour and I now understand the reasons why, they don't make it much easier to live with.
My husband has taken care of our finances from the day we were married because he was very good at it and it made him feel good. He was 40 and single, and I was a divorcee with 2 children, and used to doing all the looking after by myself which can be a little daunting, also because I could also tackle a lot of typically "male" jobs like diy. I backed out of some of them because I didn't want to be "competition".
His compulsory shopping drives me crackers because I'm worried sick that we'll get into financial trouble. Over the past 2 years I saw our fairly healthy bank balance diminish to next to nothing. My husband still drives and so I have no check on his expenses. Nowadays he's very secretive about it anyway. In the very near future I shall have to pull the reins in myself but I'm afraid that will be a dark day.
I, like others on this forum, now feel that I am the chief cook, bottle washer and maid although my husband and I always used to share chores between us. In spite of some body failings (the ticker is not too co-operative lately and makes me tired very quickly in spite of the medicines, and an old accident has come to give me 3-5 migraine attacks/week and increasing, but I'm only allowed 2 Zomig/week to avoid conditioning.
I have been able to manage, albeit lately with 4 hours of home help/week, mainly to do with cleaning jobs I'm having trouble with due to a back problem.
My worst worry apart from the finances is that I cannot keep up with the tidying anymore. I used to be fairly organized, even while working full time. Nowadays I hardly ever get beyond keeping the kitchen, lounge, hallway and washing in reasonable order.
I'm losing contact with a lot of people because I no longer have the time/energy to visit or do some shopping or to have the odd lunch with them. They seem to think I'm making up excuses. They don't want to visit me at home because they feel uneasy as PD is alien and therefore a little frightening to them. I've stopped explaining until I'm blue in the face. I've decided it's not worth the one-way effort.
I'm worried that either my body or my mind, or both, will give up so that I can no longer look after my loved ones, that is, not just my husband, but also my 91+ mother who still lives alone (with some help from outside). My sister (5 years my junior) got angry over something my mother (who's rather lucid) decided reference (smallish) equal gifts of money to her 3 grandchildren of which 2 are my children and shetherefore decided to stay away from mu during 9 months, leaving me to see to everything for mum by myself "because 'I' was getting the lion's share.
I also have a physically handicapped 40year old son with a demanding IT job so I do his washing and ironing, admittedly with great pleasure. He has a steady girlfriend who's much younger and studying for her master's so she too is kept very busy, but not too busy to join us for a meal once a week. She gets on great with my husband and me. Son No2 has 3 children whom I see (only just lately after 5 years of no contact) about 3 times a year because my daughter-in-law is not too keen on me but she won't say where I've gone wrong. I went over just about every word swapped in the past but without feedback it's impossible to figure out what caused her to be so angry with me. Needless to say that this situation weights extremely heavily on me to the point where I just want to hide in a dark hole sometimes.
I do realize most of these situations have nothing to to with the PD, but at times it all piles on top of the daily PD worries and at times I feel like I'm hanging onto a steep rock face by my fingernails.
I's be grateful for any ideas on how I could try to cope better because I'm at my wit's end.

By lurkingforacure On 2011.04.25 23:08
Wow, that's an awful lot. Family can cause problems like nothing else can. And stress is stress, no matter the cause or source. It takes a real toll on caregivers who are already stressed to begin with. You are not alone in any of this.

What I've learned over the years is that it's OK to realize that sometimes chemistry with someone else (particularly family) is just not there, and in fact, some people who might be related to you are NOT HEALTHY for you to be around. I consider these to be toxic relationships, and spend as little time as possible with these people. A tip on how to tell: if you are not eager to see them, never think "I can't wait to have dinner with XYZ again soon!", or don't look forward to seeing him/her, then you might want to limit the time you spend together. Some people are just joy-sucking vortexes, gaining energy/power/whatever like some freaky alien by draining the joy and energy from others. Most people like this are not even aware of their draining effect on others. Those that are, don't seem to care. Learn to spot them and avoid, or if that's not possible, minimize contact. It took me waaaay too long to learn this and act on it, I wish I'd realized this sooner and had the balls to avoid those people who are not healthy for my family to be around, blood relative or not.

Sadly, you will probably find, as I and many caregivers have, that you have very few people who are truly your friend. Some "friends" may even turn on you, which is the most painful of all. You just have to suck it up, realize the type of person they are, and move on. I had some particularly painful experiences from someone who swore confidence concerning my husband's diagnosis early on, only to find she had betrayed the confidence behind my back to not one, but an entire legion of other mothers at my kid's school. Nice.

Sounds like you need some help. I'm laughing, because I'm preaching to myself here. My husband has PD, we have two young kids, several of our parents are very ill and all live close to us. I'm running from one child's school to a parent's house to make sure meds are divvied up and bills are paid, food in the pantry of multiple households, hauling someone to a doctor's appointment or a hospital, picking up prescriptions, after school activities, it's a crapload. I don't know how I cope sometimes, I just do. Thinking about it seems to make it harder somehow.

On the money thing, I have read mirapex and perhaps some other agonists, maybe even the mix of meds your husband takes, can cause compulsive behaviour. You may want to take a closer look at the meds your husband to the doctor and see if there's anything he can do to help with the compulsive behaviour (for example, weaning off of a drug). But at some point, you are going to be the finance person. You might as well start now, learning what you have and where it is, because at some point it is almost inevitable that you will be handling your family's finances.

You also need to get some legal documents in place, now, while you can, like a power of attorney, one for health care as well, living will, will, etc. This is good preparation for anyone, PD or not, but is especially important for a caregiver to have so that when, not if, you need to handle things, you can. It is especially important if there is family that may not agree with what you think is best. I would get these documents for both your husband AND your mom. I dont' know where you live, but there are usually legal services for the poor/elderly that can help with the basic documents. The internet is also a great source, there are sites that offer blank basic forms by state. If you need more complexity than that, you'll probably need a lawyer, but at least it's a start.

This forum is the only place that we PD caregivers can come to and vent, share, commiserate, and support each other. There is a wealth of information in past posts you may want to delve into, and any question is fair game. Welcome to the forum and I hope you find support and comfort here.

By poppadum On 2011.04.26 05:14
Lurkinforacure, thank you sincerely for your wise words. Just the fact that I feel understood makes me feel a lot better. I printed your answer out and put it in my wallet so I can look at it at difficult times in order to remember I'm not alone.

Thanks to your advice I've decided to keep my sister at arm's length, on a hello-please-thank you- goodbye basis for mum's sake.
You made me see that it should be sufficient to tell so-called friends "Hubby takes centre stage" and refrain from further explanations as they are wasted energy.
My UK in-laws aren't very interested in what goes on here. Hubby sees them once a year. He either flies or son No1 or I drive him there.

For 5 years we lived in the UK (hubby is a Brit) but for me it was like moving back in time in more ways than one. In the end we returned to my homeland Belgium. This saved my husband's life when aged 49. He suffered a massive heart attack with complications. Health care here is second to none. He had experimental open heart surgery and so far this has given us an extra 18 years together. Unfortunately his heart cannot cope with much stress and therefore I am loath to upset him. That is why I'm worried about taking over the finances from him.

I've been looking after mum's finances, paperwork and shopping for some years now because she doesn't like to go out much, apart from her daily walk.
Although we have already talked about it, she still needs to write down the details for her funeral. Thank you for reminding me because it went totally out of my head.
In a 'previous life' I had a very tight budget and over the years I implemented most of the norms I had to adhere to in those days.
Because at present I cannot control hubby's expenditure I had a word at the bank, where they are kind enough to ring me when anything out of the ordinary is about to happen to our account.
Our wills are government registered and filed with our notary.
It's "taking over" hubby's independence bit by bit that I dread because it will hurt him no end.

During the past 2 years or so, the shambles in the house have really been getting to me. When hubby has been in for 10 minutes I have to do at least an hour's work. One would think it's quite impossible to be so quick for a super-slow PDP. Everything gets misplaced and all I seem to do is tidying up and looking for things.
I've tried asking him to do "harmless" things in order to keep him busy but it always ends in a small disaster resulting in more work for me. An example: on Easter Day I asked him if he would pick up an order of cake and bread at the baker's. When he came home I was putting on make-up. Hubby decided to put the cake in the fridge. As I hadn't cleared a space for it beforehand, he decided to do it himself in order to help. He moved just about everything from the fridge in the garage to the one in the kitchen and vice versa. A large pan of fresh soup went missing. Ok, no drama, just no soup that day. Last night I found the pan with contents now sour, behind some stuff next to the washing machine.
Things like that happen every day and because I always seem to be worn out I don't cope very well. I cannot be angry with hubby because it's not his fault, so I keep shtum. Neither can I be angry with myself because I'm too worn out to go through every possible scenario beforehand.
Does anyone have any advice on how to handle this? I know it will lessen when it's wheelchair time but nevertheless I hope that will be a long time to come.

By lurkingforacure On 2011.04.26 07:51
Good for you, that's a great start. Eliminating as much stress as possible from YOUR life will help you cope with the PD issues. It is actually a good thing for everyone to do, taking a close, hard look at their life and seeing what brings them joy, and what brings them misery, stress, frustration, or emptiness. Ditch the latter and expand on the former.

I dont' know what to say about the clutter. I actually posted here some time ago about my husband's penchant for using five or six glasses in an evening and leaving them on the bathroom vanity. It drives me nuts. He needs the water for his meds so I can't complain and before PD he was neater than me! So I know he is not this way normally and if he could help it and had the energy he would haul all those glasses to the kitchen himself. But alas, we don't have that energy. It's just part of the lovely PD package.

One thing I read here that really helps me is this: our loved ones would not want to be this way if they had the choice. But they don't. As hard as being a caregiver is, it is much worse to have the damn disease. Sometimes when I feel overwhelmed by PD and all it brings, I remember my husband and how crappy he feels, all of the time, every day, knowing it will not get better. I don't know how HE copes, but he does, and that gives me a lot of strength. I always get weepy when I think of this, and it makes my own issue disappear, at least temporarily. I hope that helps too.

By poppadum On 2011.04.26 12:00
Hubby has been out of the house all day and it's amazing how much work I could get done because I didn't have to do anything twice, or 3 or 4 times. On days like this I have a feeling of achievement because I can actually see results. It's a strange thing to be happy about.

Reading your answer, Lurkinforacure, made me realize that I must look a right sight, going round the house with a damp cloth in one hand to wipe all the spills and a bucket in the other to collect glasses, drink bottles, mugs, plates, plus everything else that is left around the house, garden, shed... By the time I get back to the kitchen I can fill the dishwasher.
I read somewhere that one is supposed to take 10.000 steps a day to keep fit. Maybe I should drop some hints for a step counter for my next birthday and see my daily tours as "exercise" rather than a chore, with a "paper" chase thrown in. Thanks for planting the seed for the idea!

By karolinakitty On 2011.04.26 23:12
Hi and welcome to the forum
You don't say what drugs your hubby is taking and i know that European drugs can be slightly different. Most PD drugs here in the states have compulsive side effectsvincluding shopping.
This month on my facebook i have been doing daily issues dealing with PD as this is PD Awareness month. My computer is down and out And i am using my phone but will try and copy what i wrote about dealing with This issue.

<p>A little late today but have had computer issues.....</p><p>As a caregiver, perhaps, no, I know, I see things from a different viewpoint. My dear man; my dear Jim; he puts up with my ďmotheringĒ, even when I donít need to mother. He takes my stares, my analyzing looks and says please: Please donít look that way, I am still who I am inside even though the outside is somewhat different.</p><p>It is so hard to draw that line between being a caregiver and being a lover. Both personalities want to make sure another person is well taken care of. Both want to ensure the best life you can live. Both give of themselves, without question. You do what you must do and move forward. Any relationship has its good and bad points.</p><p>Now I know this disease affects both men and women equally. They both have egos and dignity that must be addressed. I am speaking of our situation and our experience so it might seem a little one sided.</p><p> </p><p>When the male is the patient, there are role changes that take place. In a typical relationship the man is the Alpha, he is the king of his castle, the one who protects his family, the one who all little girls cling to, to save them from the boogie man or monsters under the bed. Ladies, I donít care how old you are, you want your daddy to protect you and keep you from harm. You want him to be able to take care of all those creepy crawly things that make life a little harder to bear.</p><p> </p><p>Well, when daddy takes ill, when he can no longer kill the spiders, get rid of the monsters and chase away the boogie man, somebody has to step in and do it. The question is when? When do you take away from daddy the powers that he once had? How do you take them away without hurting him in the process? How do you take them away without killing dignity and respect? That is the fine line we walk. A man still needs to be a man, and a woman still needs to be a woman, but, as one starts to fade away, the other has to pick up the slack. The secret is to pick it up gently and in a loving way.</p><p>The secret is not to react immediately with anger, disrespect and overwhelming dread. To not look like the end of the world just happened and life is over as you know it.</p><br>

By karolinakitty On 2011.04.26 23:14
Sorry about the aliens in there. I couldnt get them out. Lord
I need my computer.
It also didn't copy it all. As soon as i get my puter back i'll post it all.

By pdspouseagain On 2011.05.01 20:35
Hi, this forum helped me so much about a year ago, here i am again.Thank you to everyone who shares and lets me know we're not alone. Yes, sometimes it does seem like i am picking up and wiping up after a 2 yr old son, not a 68 year old husband.On my better days, it helps to keep telling myself this is all the energy he has, let him spend it on what he wants to do, while he can do it; a good marriage isn't worth destroying over messes and too much stuff. kcarolinakitty, thank you for your beautiful words "not to react immediately with anger, distrust and overwhelming dread", you are very wise and loving. And your words "not to look like the end of the world just happened" gave me a needed laugh. Hallucinations are the biggest problem now, and last night on one of the 5 trips to the bathroom in the middle of the night, my husband was freaked out because he was convinced from a dream that the end of the world was happening, so your words rang a bell! He also sees people who aren't there, thinks people are in our bedroom, etc. We went to his neurologist, he is on mirapex and stalevo and vesicare, the doc not helpful, said, if hallucinatns get bad, we have medicine for that. We have tried eliminating the mirapez on our own, seems to stop the hallucinations, but then hard to walk, crawled on the floor from bed to the bathroom the other night. last nights hallucinations so severe and disruptive, we are going back to the neurologist tomorrw, also will seek another spedcalist. TY to all for listening.

By susger8 On 2011.05.02 08:28
My dad has had a lot of trouble with vivid nightmares and nighttime halllucinations, waking up yelling most nights. His neurologist suggested clonazepam, but that made him too groggy during the day. We ended up with 6 mg of melatonin every night at bedtime, and that has worked surprisingly well. Worth a try, anyway.


By pdspouseagain On 2011.05.02 20:37
thanks for the suggestion, Sue, We are seeing the doctor tomorrow , and I recentlyfound out he is not a movemnt specialist, so we will be getting an appointment with one of them soon, too.

By susger8 On 2011.05.03 08:03
Good idea. Switching from my dad's "garden-variety" neurologist to a movement disorder specialist was the best thing we ever did. The old neuro just was not up on the current research or how best to medicate someone in the later stages of PD.


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