Helping Those Who Care for Parkinson's Patients
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| Mom was diagnosed with PD about 20 years ago. She had horrible dyskenisia & her weight dropped to 85 lbs. as a result. She had DBS surgery in June 2006 which "cured" the dyskenisia but she still struggled with multiple falls daily. She fell & broke her wrist in spring '07. While that was still healing she fell outside on our patio in June 2007, busted the back of her head open & layed there for several hours before anyone found her. Mom refused to use a walker because she said it didn't stop her from falling. She has a motorized chair but runs into furniture & walls of she tries to use it & falls trying to get in & out of it. She's suffered from extreme vertigo off & on since that fall, has been through multiple rounds of physical therapy & was hospitalized two months ago with a severe lung infection. Physical therapy does no good because the minute the therapist walks out the door she reverts to doing things "her" way which just seems to make her fall risk greater. I live in an addition to her home & thought when I made that move years ago it would make it possible for me to take care of her. Because I'm not right in the house with her it's not much help anymore. My sister lives in the same quarters with Mom but her patience in dealing with our mom doesn't last very long due to issues from the past sister hasn't been able to let go of. Quite frankly, we're both mentally exhausted. My sister "shut down" a couple of months & said she couldn't help anymore. I've been trying to work full time, make long overdue & needed repairs to my home & make sure Mom was okay. Prior to the hospitalization in October Mom realized something wasn't right with her memory. She talked about going from one room to another & not being able to remember what she got up for. She couldn't remember how to make a bed. She put things places & didn't remember where she put them. She puts her clothing on backward, arms through neckholes, etc. She was placed on oxygen after the lung infection & I've come home several times to find it off & her saying she forgot to put it back on after getting dressed, etc. She forgets to take her meds or takes them at the wrong time. She doesn't understand the reasoning behind why she can't drive. She gets something in her head & won't shut up until whatever she wants it taken care of. She doesn't understand why we don't want her outside roaming around on the concrete patio. I had a medical alert system installed but she won't use it. She prefers to call the neighbor if she can reach the phone or lay in the floor until somebody find her. For the past few months I've felt she was trying to do everything she could think of that she shouldn't while being incapable of doing the things she needs to do. I took her to the ER earlier this week after she hit her head on the patio & had a horrible black eye & forehead. Fortunately, there was no damage but they admitted her for observation. They had a neurologist see her & he feels she had PD related dementia, that she can't comprehend the danger of trying to do things she shouldn't. That's hard for me to understand because she knows what she's doing before & after she does it. The hospital doctors say she needs someone with her 24 hours a day & their recommendation is long term nursing home care. I'm in the process of arranging for in home care but we only have enough funds to cover that for a few weeks. She already has Medicaid so it's a blessing that we won't have to deal with qualifying for that. I got her on a waiting list at 3 nursing homes & left messages at 3 more. Mother sees her regular neurologist in a couple of weeks & her primary care doctor mid January. I don't know what their recommendations will be. I'm struggling so badly with all this. I've cried so much the past 5 days you'd think I shouldn't be able to cry anymore. My sister has stepped up to the plate & is trying to do as much as possible but I fear it's just a matter of time before she will explode from the stress. Mother is trying to keep her life status quo. She doesn't want a stranger with her for more than a few hours a day. Sister has offered to sleep in the floor in Mother's bedroom so we don't have to hire someone 24 hours a day but I don't think that can work for long because she has to work & needs rest. It's also not fair to put all that burden on sister & the thought of sleeping on the floor every other night makes me sick at my stomach. Mom wants to be left alone for a couple of hours after we leave for work, have someone here midday, me cover after I get home from work until bedtime & sister to sleep in the floor or have a nursery monitor so she can hear from the other end of the house during the night. She doesn't understand why I've been crying all the time. She can remember details about things I've talked to her about the past few months but forgot that Christmas Day was her only grandchild's birthday. Sometimes I feel like she's ready to give up because she has no quality of life but her body won't cooperate. Yesterday she spent the day in my living room watching TV & listening to me talk. She could keep up with what I was saying & seemed mentally with it. We're trying to make sure one of us is with her whenever she moves from one place to the other because the dr. told her she wasn't to move around alone. That means someone has to stay in the room with her at all times. Mom's attitude is that she's going to fall & there's no way to avoid it. I'm scared to death - scared what funds we have won't last until a NH bed becomes available, scared that putting her somewhere isn't the right thing, scared she & sister will blame me if I insist on putting her in NH, scared she won't be taken care of in NH, scared sister is going to crack & all responsibility will fall on me again & I won't be strong enough to shoulder it alone - just scared all around. I haven't been able to function properly at work for over a month. I dread coming home. I've been reading some of your posts & realize this possibly will get much worse. That scares me as well. I don't know what we're going to do but I'm glad I found this forum. |
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Welcome to our forum. I think that you will find many of us sympathetic to your issues - we have all been there or will possibly be there. I must compliment you on your post - it was an excellant description of what is going on in your life. If it is any consolation, this is "typical" for advanced PD with dementia. The first thing you should know is that it is ok to place your mother in a NH. This is where she will get the best care (hopefully) and as a result you and your sister will be able to spend quality time with her. Second, do not listen to your mother. She has dementia and therefore is incapable of making decisions for herself. Yes, there are times when she will seem "with it" and rationale but those times are probably not often. The reason for some of her behavior is the dementia results in impulsive behavior with an inability to assess the consequences of a particular action. Thus the stubbornness, falls, and manipulation. You and your sister are allowing yourself to be manipulated because you are working under the assumption that this is your mother as she once was. You love her and are accoustomed to doing what she says but you are now dealing with a role reversal - you are now the parent and your mother is a child of about 2 yrs old. Only you can decide what is safe for her and she can't make the rules anymore. Get ready for tantrums. Do not waste your time explaining the rules to her - she is no longer able to process that and you will only be more frustrated when she asks the same thing 15 minutes later. Keep thinking 2 yr old - it helps. Understand that your mother may start saying very hurtful things to you. This is more manipulation. Try to not let her remarks hurt you (they will) because this is not your mother, it is the disease. She may threaten to call the authorities or to go it alone - this can't and won't happen. Keep a diary of her actions in the event you need documentation. This can also be theraputic for you. Once the medical personnel has established that she has dementia you are responsible for her and for her actions - DO NOT LET HER DRIVE! I can speak to all of this because I went through it with my husband who died almost a year ago. Some of his last statements were "get that woman away from me" and "I should never have married you because you have changed". Yes, it hurt because he was never like that and we had a good marriage. It also helped that he was naked, under his hospital bed where he thought he was "fixing the car". I will share some interesting facts with you. The incidence of PD dementia is 50 to 70%. Physicians don't tell you that but it is easy to find on the internet. 40% of nursing home admissions are because the caregiver either dies or becomes too ill to care for the PD pt. The stress related to caregiving greatly increases the chance of stroke, diabetes and cancer. Keep your chin up - we are here for you. Take care of yourself. Try to find some humor in all of this or you will go crazy. |
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Thank you so much for your reply. I was so hoping for input from you. I've read your posts so am somewhat aware of your struggles & background. Mother has already said some very hurtful things to me. At the time I thought they were simply attempts to manipulate or pit me against my sister. She seems very paranoid. When I talk on the phone she turns the TV down so she can try to hear or interjects comments as if she's part of the conversation. You are so right in that she seems unable to comprehend consequences of her actions. I've been arguing and angry with her for several months because I felt she was simply being defiant & trying to exert her independence. She will promise to do or not to do something then turn right around & act like we never talked. Afterward she will apologize & say she doesn't know why she does some of the things she does. The rollercoaster has worn me to a frazzle. After she was hospitalized in October I asked her to promise she wouldn't try to drive any more. Her PT explained to both of us that she would be held responsible regardless of fault if she was involved in an accident due to her physical condition. She called me once & asked if she could drive. I promised I would take her where she needed to go & she did as I asked. Right after Thanksgiving I asked a neighbor to let me know if she noticed Mom's car gone. She called me about 3 weeks ago to report Mom had just left in the car. When I finally reached her by phone she said she didn't answer my calls because she was talking to my brother on the other line. I persisted but she wouldn't admit what she'd done without me telling her where she'd been. She finally admitted but then wanted to say it wasn't far, she was only on back road, etc. She called the neighbor to ask if she was the one who called me. About 3 hours later Mom called me to apologize for driving & claimed she had gone somewhere other than where she originally admitted to going. A few days ago she said she knew she wasn't supposed to drive & said it was an act of defiance. The apologies after damage is done have led to such confusion on my part in trying to figure out if she was intentionally doing things or if there was some medical reason. Part of me feels a sense of peace in knowing about the dementia. You are so right that drs. don't make people aware of that aspect. It might be easier to deal with if that information was shared with families sooner. For the past 6 months Mom has been obsessed with getting much needed repairs done to an area of the house where my sister used to live. I stayed out of the project as much as possible because I knew my sister would be mad when she found out. Sister planned to take care of the project herself. Mom fell one day while working on her project & called me to help her up. That's when I realized she had a full blown decorating project going in the area she claimed she was going to make my sister move back into. I thought she was just having repairs done, painting basic colors & replacing flooring. She was hanging pictures, etc. like one who do in their own surroundings. When I talked to her about the fact that she should leave the decorating to sister she didn't seem to understand. Now she says she was doing so much because she was enjoying it. Sister helps as much as possible but is undiagnosed obsessive complusive. It takes her 5 or 6 times as long as the average person to do anything she undertakes & she has to research for weeks before making the slightest decision. She's cracked under the pressure several times in the past so I fear she won't be able to handle things this time around. When she cracks she can barely function herself & all responsibility falls back on me. Sister is at least able to laugh sometimes at things Mom does & is better with her as far as patience than I am. I suffer from long term, low level depression that is managable until there's a crisis. In a crisis I hold up for a short time but wind up sitting around crying all the time. I know I must push myself to function as normally as possible & not give up. My biggest fears right now are that my sister will continue to try to do things so Mom's life can stay as status quo as possible, that what funds we have won't last until a bed in a decent NH becomes available & that Mom & sister will fight the idea of NH. I've always felt responsible for making sure everyone & everything was taken care of & this situation feels so out of control. I also fear for my own health & that of my sister. The hospital drs. told me this will only get worse. When I start to doubt the NH decision I try to remind myself of that. I also feel we need to get her placed ASAP so we don't have to worry about what we'll do if she gets out of control. Thank you so much again for your insight & for all you contribute. I lost my own husband to cancer 20 years ago (he was 36) & I always feel a connection to those struggling in that same situation. Your willingness to share is such a blessing. |
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This is so easy for me to say now - I do; however, remember how bad things were. You feel like Alice in Wonderland. My recommendations are: Don't argue or explain things to your mother. You are wasting your breath. She won't remember. Just do what you believe to be best. Get that NH placement as soon as possible. Do you have POA? The decision is yours. If you do nothing else - TAKE AWAY THE CAR KEYS! Find all of them and hide them away from her house. This is critical. Remember this is not your mother but the PD. |
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What Annwood says above about not arguing or explaining things to your mom is correct. And let me reinforce - Do what you believe to be best! You mom is not able to make decisions now especially with the dementia. It is so hard with a parent, having to do the role reversal with the decision making, but for the best for all of you, it has to happen. Several years ago, we had a very old but very well loved dog. Due to a tumor in her jaw that was keeping her from eating and causing pain, we had to make the decision to put her to sleep. This was the hardest decision that we ever had to make... until we had to make the decision to move my FIL out of his home. Life is a struggle when you have to be the responsible one. Like Annwood says, don't try to explain to your mom that you are doing these things in their best interest. If you do, they will not agree with you. That is a given. You will need to take comfort in the fact that you are doing the right thing and that you are doing the best that you can. Good luck and welcome to the board! -Jenny |
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| Lostd******r : If you have read enough posts you are probably familiar with my patient's point of view. First I must tell you the advice already offered is as good as it gets. As a "stage 3 PD'er I am just entering that phase of the disease that triigers irrationality, hostility,offensive behaviors etc. The weird part of this is that some part of my brain acknowledges these patterns as Parkinson's related. Yet, like an alcoholic,drug addict or compulsive gambler, I don't seem t have much control over it and suspect the worst is yet to come. Fortunately, I had anticipated most of what has happened following my DX. So the POA,Will, & DNR are all in place, my DL was taken away about a year ago and as Dustin Hoffman said in his Ratzo role in "Midight Cowboy" ---"I'm just dying here"!! I tried to get my beloved (now Tough Beloved) caretaker spouse to export me either to an NH or VA Hospital but she and the primary conspired (of course) to keep me at home. In your case it only took two paragraphs of your posts to convince me you need to get your mom in a NH ASAP! Feel free to read this post to her and either she will see some merit to my logic or will place a hex on me to assure I will have to be reincarnated before I experience Karma. AS for you & your sister, change what seems to be a child's love for her mother to the "tough Love" version Bob C |
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I am so sorry for what you are going through. I think all of us caregivers wince when we read posts like yours because we all know what looms ahead, and yet with PD, there are so many unknowns. Every post helps us all, so thank you for sharing. I cannot offer more than the exceptional help already given, the people here are wonderful and you should come to the forum anytime you feel you need support. |
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Bob, I just love your input to this board. I wish my FIL took the time to get to know this disease the way you have. I just wanted you to know how much I appreciate and value your posts to the board! -Jenny |
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| jenny: Thanks and God Bless! Look for me when you get to the "other side". Bob C |
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| Bob, why did you want to go to a nursing home or VA hospital if your wife was willing and able to care for you at home? I have never heard of someone wanting to go to a nursing home no matter what. I hope I never have to make that decision for my Dad. |
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| Mary: Because I love her and am too well versed on the late stages of PD to want her to go through what I know some of you must endure daily. Just read some of annwood's posts and you will understand. And because as you know it is difficult for me to post without humor add: (1) the VA owes me something for my 4 years of service to my country and (2) Maybe I will meet an attractive nurse who will revitalize me. LOL Bob C |
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| Bob, my Dad knows all of this stuff too, my Dad is also a Veteran and likes pretty nurses, but despite annwood's posts and him knowing that caregiving is difficult, he always chooses to stay out of a nursing home. Yet you do not and I think that is wonderful. If someday I can no longer care for Dad for whatever reason, I hope he takes that decision out of my hands. It would be so very difficult for me to make it. You take that burden off your wife with your willingness to go. That is truly wonderful and lifts a weight of her shoulders. You, Bob, are a good man. Love, Mary |