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So my mom has Parkinson's and has help 5hrs a day but when the help goes home, she has nothing to do. I speak to her everyday and see her once a week, but it's not enough for her, she lives 30min. drive one way in good weather. She has been told that she shouldn't be living at home and needs more care. Night time is bad. She has chosen not to listen to professional advice. She has fallen, slipped under her bed and hasn't answered her phone, which then has me running over to her place. Then i'm making her dinner, and she wants me to pull her into the bed because she's so stiff/frozen that she can't get into the bed herself, i can't lift or pull her into the bed without injuring her or myself. She wants me to be her entertainment, caregiver when her help has left and if i don't do enough for her, she piles on the guilt.I can't even get her in or out of the car without hurting my back, but she only thinks about herself and not how this affects the people around her. Now i feel bad for even saying all this. My daughter & husband are expecting their first child in the new year and my mom is starting to feel jelious in advance about me spending time with my daughter and grandchild and is saying things like you can't be over there helping all the time you know, (daughter's name) has to figure it out herself.

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It really appears as though mom needs more help than she can get/afford at home, yes?
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Yes she does but the government only gives so much help and she won't spend anymore of her own money, so she like to delegate me to do things for her and if i don't she makes me feel guilty, then she will make her grandchildren feel guilty if they don't see her as often as she wants. All the professionals feel she would be safer in a care facility. I understand it's her decision so i'm not saying where she should live, i just feel it's not my responsibility to fill her void because she doesn't want to listen to professional advice. :(
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Do you hear yourself? Poor Mom wants some company, but you know she's old, not much fun, and god forbid expects me to help her. Ugh Parkinson's is so ugly, she freezes, can't move, falls under the bed. What a selfish parent why won't she go to a nursing home, and free me to enjoy my grandchild. Hell, she will probably expect me to visit her. Why won't she just die, so I don't have to bother anymore. She is so selfish.
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So she's saving her money for a rainy day? And it's pouring outside the question is, who can make her see this?

But of course, if this lack of reasoning is dementia related, and you don't have poa, then to need to get guardianship in order to make good decisions for her. Not easy, by any stretch.
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ABCD55, yes your Mom will pile on the complaints [guilt] because she's not happy with her life right now. She can feel her independence has slipped away, and probably is scared. Not knowing how old she is, she may be from that generation where she wants to stay in her own home, not realizing there are wonderful continuing care places where she can meet people of her own age group, form new friendships, and start to enjoy life once again. It would be an exciting new chapter in her life, an adventure :)

I know this will be hard to do, I had to do this with my own parents.... tell your Mom "sorry, the doctor said I cannot lift anything over 5 pounds".... and stick to that excuse. Curious, how does she get herself into bed or do dinner the other 6 days when you aren't there, or does she act this way only when you are there? Maybe it is time for her to hire someone to help her in the evenings.
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Gee ,Kathyt1 back it up a minute. Did you not read the woman was hurting her back pulling on dear old mom.? You have no idea how much her mother weighs.I just love it when another martyr gets on here .Are you one of those that likes to let others know how much you do for your parent, bet you really like the compliments on what a "good" daughter you are. Not everybody's situation is the same. Maybe you have just been lucky you haven't been hurt taking care of your parent. This forum is to let people vent, get emotional support , share ideas , not get hit over the head by some holier than thou cross bearer.
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Get her to Assisted Living where she can nag the professionals. Do NOT visit her there for at least two weeks so they can redirect her controlling nature. She loves to push you around, but at ALF they are all the same age. No bullies in that playground, nope, they learn to play NICE. Visit once a week, no more. Do not allow further manipulation. Toss away the guilt card, because she is playing you like a big fat fish.
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It sounds like Mother truly does need some evening help. Talk to her case worker about an updated needs assessment. Would it be good to for her to split the amount of help she has now, with 3 hours during the day and 2 in the evening?

No government program is going to pay for 24/day care for her in her own home. If/when she needs that much care it is more cost-effective for her to be in a care center (which they will pay for).

You need to decide how much time and energy you want to devote to your mother's care, explain to your mother (and her case worker) what that amount is, and firmly stick to it. It sounds like you will call her every day, visit her once a week, and help out in an emergency. Stick with it!

Mother can invite you on a guilt trip, but you can decline to go. The problem here is that she has Parkinson's. Not Your Fault. Parkinson's is a huge burden for her, but it is nothing for you to feel guilty about. Mother does not want to do what professionals had suggested would be best for her. It is her right to make that decision. But there are consequences to that decision and they are Not Your Fault.

More than half (I've hear 70%) of persons with Parkinson's also develop dementia. Do you see this happening with your mother?

I hope you can help Mother get the additional help she needs. I hope you can stop feeling guilty for not supplying it all personally.
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First i would like to say to Kathyt1 you don't know anything about me, so please don't respond to my questions if you're going to be disrespectful to me instead of just giving some nonjudgemental advice. We are all here for the same reason to find support as caregivers, family etc.. If i want bashing i know where to go.

For everyone else i really do respect your advice. I do think at times she does show signs of dementia, that being said the government care assess her every 3 months. I have tried to tell her to get overnight help but she refuses saying shes fine, yup she lies to me a lot. So really it's about me and this guilt i have. She complains that her friends don't like to take her places because they can't lift her walker into their trunks, and get her into their cars, ( she refuses to take taxi's or special transportation that takes you door to door) she say's it not a big deal they just won't do it. My mom i feel has unrealistic expectations from people, I'm not trained to lift her into bed or pull her out of bed. What she really wants is to live at home and have everyone there to do everything for her. When she was in the hospital for surgery after she fell and broke her hip, the social worker told her she shouldn't be living at home, my mom told the social worker if she ever mentions her going to a care facility again she will fire her and ask for someone else to take her case. The social worker told me that my mom is a very difficult woman, and that they had a hard time dealing with her. So really this is about putting up boundaries for myself, caring for me and not feeling guility about it.
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It really does sound as if Mom needs more assistance now. I can't imagine her friends being able to help her in and out of their cars. My dear friend with Parkinson's has 3-8 hr attendants to help her husband cope with all her needs at home every day. It is a disease that requires multiple caregivers around the clock to stay at home.

Your Mom is afraid and probably in denial about her disease. You can only do so much as one person. Please don't get on that guilt train. I think our parents don't realize we aren't exactly young and agile ourselves! If she is determined to stay home, in home caregivers should be brought in as soon as possible while she is able to communicate with them. Hopefully all of her finances and legal matters are in order for you to take over when that time comes. Wishing you all the best!
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Remember that Parkinsons also affects the mind, making it as stiff and entrenched as the extremities. Stubbornness to the point of unreasonableness is one result. Anything that cleanses the liver helps relieve symptoms of PK, so encourage some liver-cleanse tea. My mother complains about the hospital bed, but I just repeat over and over, "If you were in a regular bed, I could NOT help you." She was also insisting on not getting ready for sleep until her tv shows were over, but I said, "that's too late for me. you can let me get you into bed and then watch your shows in bed, OR you can get yourself in bed." After a couple of nights of sleeping uncomfortably, she now gets to bed on the schedule that works for me. It's the only way I can do it. The alternative is longterm care at a facility. They forget that. So you have to repeat it many times. They forget their limitations. And yours. So you have to repeat that too. "In order to help you, I need to be home by this time...OR you can hire an attendant." Just get ready to say that every day. My advice would be to not talk about the rest of your family for awhile, until she starts to respect your time limits. Don't give her reasons. Just "this is the time I have, to help you." And -- Do you have the equipment? The Hoyer (sp?) lift, the gate belt, the bedside commode -- those are great for protecting your back.
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I clicked kathyt1's post helpful for a weird reason - at first I read it too fast and I thought it was meant to be ironic! Now I realize it was meant to espouse the view that duty to a parent who is choosing not to accept or pay for other help should eclipse the duty to self and children and grandchildren, which I think is not right at all.

I really really don't think this is about the poster wanting time with Mom to be more fun - I do think this is about a common problem, that the middle generation is torn in two between the elder and the younger and simply can't be everything the elder wants them to be. You know it is fear plus lack of empathy talking when her mom actually discourages her daughter from being involved her grandchildren and great-grandchildren!

ABCD, I see a rough road ahead - if your mom has lost that much judgement and empathy already, and is essentially driving you away with the guilt-tripping out of her desperately perceived need to draw you in closer, it is not likely long until she really cannot be making all her own decisions. Getting the financial and healthcare POAs in order is an important step. I can't help but think that she may need a more comprehensive geriatric eval to see where her mental status really is, to tune up her meds, and to have more people in the picture all communicating to her as lovingly as possible that home alone is no longer safe...ideallly too many of them to "fire"! Maybe even a short term subacute rehab stay could be proposed to see if she can get stronger and safer enough to be home alone. Sure, she is understandably afraid of what comes next, but probably an assisted living close to you and the younger generations would be the best possible quality of life for her once she adjusted emotionally to it and found it it was safe and caring; maybe then she could relax her death-grip on your emotions and enjoy their company and attention. It is almost tragic that instead of feeling blessed by her descendants she wants to compete with them for your attention.

You could frame the repeat evaluation as a way of getting her more help to see if she can stay home longer. This is not an easy thing to do, to set limits, and to be honest sometimes it does not work out; their judgement and insight may be poor enough that they continue to refuse to see the situation for what it is, but not poor enough to be considered legally incompetent.

ABCD, you are not the one who is being unreasonable or selfish. I could see increasing visits to 2 times a week, maybe even 3, and maybe you could get the younger ones or even a friend of yours to visit with you; it might bring a little joy to her life and she'd be on better behavior instead of dishing out as much guilt. But no, you can't be her 19 hours a day every day caregiver and abandon the rest of your family to do that and you can try communicate that as lovingly to her as possible. You could ask a physical therapist to help with the transfer techniques and maybe even get equipment, and frankly, she should not get to have a choice about using equipment rather than expecting caregivers to hurt themselves of that's what it comes down to. By all means though - do not keep trying to do things you can't do and feeling bad about not living up to unreasonable expectations!
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Thank you very much. I will try and talk to her again about getting in more help. I think as people get older they're afraid of running out of money. I will try, as others have said though, if these are her choices then consequences come with them, after all, she is going against medical/professional advice.Thank you all for your kind words and understanding.
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Rereading my post, I see how harsh I was. I am sorry, I did judge you. I was wrong, please forgive me. ABCD55 I don't mean to judge you. I wanted to snap you out of your complacency. This is the tip of the iceberg. Parkinson's just gets worse. One day a week is not enough to help your mother. Phone calls are not enough. If you feel guilty, listen to that voice that says I should do more. Your mother needs you right now. Time spent now will save much pain and grief later. Decisions must be made. If you can't do the hands on care, someone must. Care facilities need to be investigated. Fall prevention made a priority. If she wants to stay alone she needs a call button in case of falling. She needs physical therapy to stay strong. Who is overseeing her medication? Can she afford more help in the home? Do you have POA, medical POA, a will, a DNR? These legal documents need to be in place. What stage of Parkinson's is she ? If it's early Parkinson's she will be fine at home with a little help.

The best book for hands on help with Parkinson's is "Move It" by Kevin Lockette. He explains how to transfer from car and wheelchairs. How to get moving when you freeze. Exercises to stay strong. Parkinson patients have unique needs. Their center of gravity is thrown off by the disease. He explains how to transfer from car and wheelchair. How to get up from falls.

Finding a balance between caring for a parent and your own life is hard. If you can't get over the guilt, see a therapist. If nothing else a therapist will help you to deal with your Mom.
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I think that often an aging parent insists on staying in their home because they think that the only alternative is the stark, bleak, shared-room nursing homes of the last century. Has your mom known anyone who is in an assisted living facility or has she ever visited one? I have been involved with four elderly relatives who moved to assisted living from their own home, and all four later wished that they had moved sooner. The freedom from household chores and repairs, extra help, prepared meals and social activities prove to be better than being at home alone. Could you arrange for your mom to have a short term stay in an AL? Maybe tell her that the doctor told you to rest your back for a few weeks so you will not be able to help her for that period. Then cross your fingers that she sees the benefits that the AL can provide. Call her daily and visit weekly just like you are doing now so that she doesn't feel that she is being abandoned.
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Well with winter here, she's really feeling it, a lot of her friends have gone south for the winter and today she stayed in all day, i speak to her everyday so it's not that i'm ignoring her and i do see her weekly. She just for some reason feels that everyone should pick up the slack so she can stay in her home. I just don't feel it's my responsibility. She has been rude and is not honest with me, if i do suggest something to her she starts yelling at me, and it doesn't matter how nice or gently i approach it. She only wants to hear that i agree with her. My favourite phrase is, i'm sure you'll figure it out and i let her. If she falls, i will be there for her but i can't convince her not to do something because she might get hurt. She doesn't listen anyway, the only people who understand where i'm coming from, is someone who has a parent like mine.
I think she has lost so much control of herself, that she wants to control everyone around her, sorry but i just can't go there, because i'll get myself sick and i'm important to my nuclear family. She has to see the reality of staying at home and not being catered to, if this is what she wants, like someone said there are consequences for her choices, and all the professionals she has seen are not very happy with her choice but they can't do anything about it and neither can i. Oh and she made a comment the other day that i don't see her enough.
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ABCD, it is not your responsibility. You aren't your mom's social director, not able to guarantee her happiness, not obligated to make unwise decisions work in spite of everything. It has always seemed odd that anyone would think that getting old constitutes some kind of entitlement. You would think she would encourage you to spend time with daughter and new baby. The start of new life. Don't fall for the fear, guilt, obligation stuff. She made her decisions and the consequences are hers too.
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Thank you so very much rovana your words just lifted a ton of weight off my shoulders. :)
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