For those who care for someone with Parkinson's disease
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Hello all, I have been reading this forum, finding solace in those that are in a similar situation as me, silently empathizing with each of your unique stories about parkinson's and caregiving for a couple of years now. Finally after reading a post by Rolow so similar to my current situation,I feel ready to join the group and put my own story out there. Oh where to begin... I feel like I could fill pages upon pages of background and what's been happening the last five and a half years, but instead I will give as brief a synopsis as I can for everything to make sense and have some context. I am a thirty-something that was living in Florida, my family originally from Ohio, and decided to move home about 5 years ago, to change careers, and do some visiting for a short time etc. Shortly after I returned home, my grandfather, our family's patriarch, was diagnosed with Parkinson's. He was 79, just recently retired and still driving, mowing the lawn, working part- time etc. **I should interject here for reference that my grandmother, although well- meaning, is selfish, raised and lived in privilege and has ingrained in her family a incredible amount of what I call "Midwest" guilt. It started simply enough as I was home- not working, by taking him to physical therapy and helping him run their errands to still feel vital after he stopped driving, to now becoming his POA, full-time caregiver and pretty much on the brink of a nervous breakdown. He has slowly lost the ability to stay by himself, having to have someone watch him 24/7 as well as walking on his own (even with a walker) as he has the tendency to fall backwards. He doesn't drive, needs help eating, and basically only goes from his bed to his chair in the living room, to the bathroom, and back to bed unless we have doctor's appointments. We have been in the hospital probably 5+ times a year from everything from a stomach bleed, a bowel impaction, potential colorectal cancer that turned out to be false, a broken knee from a steiner rolling over him as my grandma demanded he mow the lawn so they didn't have to pay anyone to do so, an anal fissure, losing consciousness several times or not being able to wake him at all for a full day, his blood pressure being under 70/40, hitting his head on the bathtub, constipation so bad that it stopped his ability to urinate, and lastly and currently... pneumonia, which he developed while I was out of town last week. I love my grandparents dearly, but also feel resentment that I find myself in this situation, (though we live next door), of being at his house everyday, before we had help from the VA, having to give him a shower in the mornings, taking care of all of his pills, taking him to all his doctor's appointments (usually 1-3 a week) and putting him to bed probably 350 nights out of 365 nights a year, being there when every single one of the terrible things mentioned above have happened. I have given up my friends, dating (non- existent!), have stopped exercising which I loved, and pretty much just hermit myself away and spend time with my parents, whom I live with, and taking care of him. I know all that is terrible, but I feel like no one will understand my situation, that I am not good company because I'm constantly stressed out and wondering what's happening next door with him if I'm not there and generally because I'm consumed with all this. It's easy to say "take care of yourself," but very difficult to do in some situations. I can't get a job because I know my grandmother won't/ can't really take good care of him. I have gained weight, have lots of problems with my neck and back from lifting him off of the floor after "episodes" he may have and during transitions, have had to start taking antidepressants, xanax and muscle relaxers because of the stress and tension, and even when I'm not there, can't think of anything else because I wonder if my grandma was able to walk him to the bathroom- or did he collapse as he often does from low bp, and many other things. So.. parkinson's is a tough thing, exacerbated in this particular situation because of my grandmother. ***I will say that I would have lost it a long time ago if we hadn't had help from the VA, which provides us an aide everyday for 4 hours in the mornings- which I know is a lot more than some receive, and I am very grateful for and know we are blessed to have. He is pretty much unconscious with spells in the mornings until lunchtime, so there is no way my gram or I would be able to handle the mornings. That basically brings us to the end of January, where his bowel impaction landed us in the hospital after weeks of cleaning him up and changing his clothes 5-6 times a day when he is basically dead weight. He then went into rehab/ physically therapy (for the 3rd time), which after a rocky start, it was going pretty well. Just when I was about to break, that happened and the rehab looking after him for a short while gave me some respite. My mother and I decided to visit my sister in Cancun for a few days as she was there for a conference. I saw him on a Sunday and he was really great- better than he's been in a long time, and when I returned on Friday he was in the ER with double pneumonia and basically in a coma. ***I will interject here that the rehab/ nursing home he was in is 5 stars, incredible staff, and wonderful care. I don't think anything hinky happened, my gram said he had a cough but wasn't bad until Friday. *** So I'm to believe it came on fast. Those feelings of guilt that keep me putting my life on hold and taking care of him/ them, creep up again saying "you shouldn't have gone on vacation- maybe this wouldn't have happened, etc." He went into the hospital Friday night and was basically unconscious in some kind of Parkinson's coma until Monday night. When he finally woke up, he was a little confused, but was himself, making a some jokes about being hungry, etc. I went to the hospital every day for hours, making sure he ate, talking with his doctor and nurses and making sure he was on the mend. ***I have a whole other post I'd like to write on the drug Seroquel, but it is so lengthy I'll leave it for later I think. Anyhow, he was on the mend, but then I went today and he was basically the worst- mentally- I have ever seen him in the 5.5 years I have been taking care of him. I don't think he even really recognized me, couldn't focus on my face, was not just confused but what I think of as delirious, looking at the ceiling, talking nonsensically, refusing his physical therapy (which is very strange for him), and doing lots of parkinson's moves with mouth etc. I called his doctor and specialist (neither which have called me back yet), to ask what the heck happened. I would think if some mental dam broke during his infection that pushed him to far to come back, I would have seen that on Monday when he woke up, not two days later. That also stands for the normal conversation on "it's a new place, hard for seniors and people with parkinson's." Doesn't make sense. Also with the amount of antibiotics he received for the pneumonia there's no way he could have any infection anywhere, including UTI which they checked for when he got in the hospital. I suppose he could be a bit dehydrated bc of the IV lasix given to get the water off of his chest and out of his lungs, of which he got a catheter. He's been dehydrated before once and it was nothing like this. In the meantime, I'm worried that the rehab facility won't be able to work with him this bad, and they will want to send him home. I finally took a stand with my grandma today, telling her that there's is no way it would be safe to bring him home like this with his mind and his body so far down the rabbit hole. I told her I can't care for him anymore like this and if his mind didn't recover a little, I didn't think it was a good idea to bring him home. I know his care will be all on me again, and with his mind gone too- though the guilt in this decision is overwhelming- I know he needs to be in a nursing facility. Of course after telling her that, many a guilt trip ensued, her telling it might kill her but she'll just take care of him herself then, etc. However, it is not because of an overwhelming sense of love and compassion or a promise made to him. It is because she doesn't have the money to pay for him privately in a nursing home and makes too much $ for medicaid. So here we are. I feel so terrible for him and having to go through so much with disease. I feel bad for my gram, even the way she is, for being in this situation, and I feel bad for myself for putting my life on hold, having to be the "bad" guy for suggesting it's time for him to go to a nursing home, and because I've wrecked my health these last few years with guilt, anxiety and depression. I also wonder why I am the one in this situation when I have a mom and a sister. I will quote Rolow which reminds me there is a "cost" to everything we do. The cost may be too ourselves to keep our PWP at home. "A skilled long term nursing home is what I think he really needs but I know he would be even more so depressed and sad being away from home. It's either he's in a nursing facility and me and my mother are less burdened but he's in deeper depression, or he's at home and not as depressed but me and my mother are stressed out. It's a lose lose situation." I can only hope he will snap out of this when back at the rehab facility, but know we will eventually end up in the position again sometime. Thanks for listening and being there even when you didn't know you were. Darby |
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| Hi and welcome to the forum. If you've been reading for awhile you know you've found a wonderful place filled with caring people who will help any way they can. Just a quick reply for now but you have power of attorney? You mentioned he was in a coma basically. During that time did he have his anti-Parkinson's medication intravenously? or orally? If not then the mental fog could quite possibly be because of not receiving his medication. Even if when he came out of it (coma) and was joking around there could be a lag time of a couple of days before delusion and muddled mental state showed up. If that's the case when more of his medication is on board the confusion may recede or clear up. I'd check and try to find out if he received his Parkinson's medication during the coma state. Hope this helps some. Again welcome to the forum. |
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| Thank you! Yes even though he wouldn't open his eyes or talk, somehow the nurse crushed up his meds and he took them via applesauce. |
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Darby, thank you for your kindness, for taking such good care of your grandpa. I'm sure that means the world to him. You are in such a stressful place right now. for years you have been over-extending yourself at great cost to your own health and well-being. this is more than one person can possibly do. you cannot continue the way things have been. it is too much stress for one human. So sorry that your grandfather experienced a sudden decline. It was not because you went on vacation. the same thing would have happened if you were right there. please try not to feel guilty. I believe the social worker at the SNF rehab place will schedule a meeting with your family members to talk about what is best for your grandfather, if he is to be discahrged from there. You have been his primary caregiver at home but this heavy load is too much for you to bear alone. your grandma does not sound competent to make decisions or to care for your grandfather by herself. I believe the rehab place cannot legally or ethically release someone back to home unless there is sufficient support already in place. There are protective service requirements for the patient's safety. I believe Medicare pays for a certain number of days in a SNF after a hospitalization; at some point that gov't funding may be used up. There are different scenarios that may be suggested for your family to consider. There are no easy answers, that's for sure. Best wishes and prayers for you and yours. |
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Darby, I wish I could wrap my arms around you in a big hug. You have stepped up to the plate, swung the bat though you did not join the team because you loved the game and come out the stronger for it. Consider it training for your life in the future. Most of us on this forum are here because we are married to, or a child of the PWP. Then there is the sage Al....who patiently answers our questions from the point of view of a man who has endured this most of his adult life and still fights his disease bravely. Sadly, Parkinson's is not a choice. It is, though, a good teacher. It humbles us even in our most frustrated moments. I can just imagine how angry you must feel at your grandmother at times, and even at your family for considering this your burden "because you are not working" or raising a family of children, or going to school to change careers. You write so well, and seem to have a clear picture of what is, and yet, not involved in a pity party. Could I encourage you, once grandfather is back at home, to reevaluate how you can learn from this ghastly burden? Instead of xanax, how about a blog or even fill a notepad with fodder for a book. Maybe someday you could turn this into a career, with a second degree in gerontology, and help other families. Without delay, take Al's advice. If all the care and decisions are laid on you, you need power of attorney to make the medical decisions too. Skilled nursing facilities, even though they look clean, cheery and smell good have their failings. Like Al inferred, once you have picked up your purse and gone home for the night, you have no idea what happens. If grandfather is restless they may have medicated him to ease their care load. And if he is asleep, not give him his PD Rx on time, every time, in the correct dosage, with the recommended beverage or food. I will rely on a SNF only when absolutely medically necessary.....like a broken hip....and even then often sneak in and sleep in a chair in his room at night. Those 2:00 pills that he is supposed to have, often have come out of my purse, as they never even checked on him after 11:00 and they know he cannot use a call button. Over the three week stay, I think they caught me in the room ONCE. I always slipped out at 6:30 to go home and dress for work. So, DO NOT FEEL GUILTY if you question the quality or quantity of care he gets. His own Dr does not know, just sees what the facility Dr charts, much after the fact. Good luck, and do not just lurk here anymore, everyone of us is in our own boat and the name on the back is PD and we are all paddling against the tide. |
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You have the right to have a life of your own. You have had this burden too long, and are too young to put your life on hold. It is wonderful that you have cared for your grandfather but it sounds like it is now too much for you. Call the VA and put him on a list for one of their care facilities. If you have POA you can do this on your own. Does he have a VA social worker? Have you called the VA caregiver help line? They can have a social worker call you. So sorry, your family should be helping more. |
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Darby, you are an amazing granddaughter to care so much for your grandfather. With that said, you have to take care of yourself too or you won't be able to take care of him. We all know this firsthand. The confusion might clear up once he returns home. It did for my husband. Even the doctors know how hard it is on him (and the nurses) when he is hospitalized. The confusion is terrible. I would also like for you to invest in the help button "Great Call" or maybe another brand. For about $25 per month you will have peace of mind. If he falls he can press the button and the proper help will be sent to his home. They will even call you if instructed so if you are shopping, relaxing, etc. you won't have to worry about the "what if's". That button is my personal security blanket when I'm away from my husband with PD. Also, my son is a RN who lives close by. When my husband falls I thought he could help me lift him. He told me they (RN) don't lift the patients b/c they aren't trained to do it. He told me to call 911 if he can't get himself up. I tried to stop a fall early February and pulled my back out so bad I was down the entire month. I won't do that again.... And shame on grandma for quilting you. You need to get on with your own life. The VA has help available. They have offered it to me but so far I haven't used it. I know it's coming but for you, sounds like you need to find out what is available. Hugs and Prayers! One day at a time. |
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Thank-you everyone for all your kind words, it's really helped. An update on my grandpa, after 12 days in the hospital he moved back over to the rehab today. He had finally "woke up" on Sunday last and has gotten a bit better with the pneumonia, though it is still lurking around. The hospital wouldn't let him eat or even drink water from Friday- Tuesday waiting to take some swallow test to make sure he isn't aspirating into his lungs. He wasn't but they still wouldn't let him eat on Monday after the test, saying they wanted a gastro to double- check his airways. So he was so tired, dehydrated and lethargic because of that, I'm surprised he is even able to get released today. He got pretty combative with me a couple times in the hospital, which hasn't happened before in addition to the confusion. Personality change due to parkinson's? Right now they have him on pureed foods and nectar thick liquids which he is rebelling against. I asked if he wasn't aspirating, why can't he eat regular food? He had to go back to bed as soon as he got back to rehab facility today because sitting up in the wheelchair for an hour exhausted him. It's going to be a long road, and I hope that they will be able to do rehab with him, because if not I have the same problem cropping up again with my grandma wanting to bring him home as I mentioned in my first post. We do have a social worker from the VA, but he told us that you can't go into a VA facility unless you were in at wartime. My grandpa was an MP in the army during the Korean "conflict," which I thought was a war. Seems like they're looking for reasons not to help. Has anyone else heard this? |
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Moonswife, I like what you said about journaling to help digest all of this. I think that would help as well as setting aside time to exercise or do something I want to. I agree that all facilities need to be checked on. I try to show up in the morning, after bedtime, at meals, etc. to see what's going on and make my presence known. |
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Darby, I was only able to glance at these articles, but there might be some info here that would be helpful to you. VA calls it Korean War and says they are entitled to the same benefits as all veterans. It might be good to keep questioning. http://www.benefits.va.gov/PERSONA/veteran-korea.asp http://www.va.gov/GERIATRICS/Guide/LongTermCare/State_Veterans_Homes.asp# |
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re: your grandpa's menu, it sounds like they are giving him foods that are easier to swallow. a speech therapist evaluated my PWP last summer and restricted her to only pureed foods. before that we modified a lot of Mom's foods to accommodate her decreasing ability to chew and swallow. there are different levels of the diet. this is one place that has some helpful info: http://gicare.com/diets/dysphagia-diet/ |
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Military time is not all equal. The dates of service determine some of the levels of eligibility. Check your grandfather's dates with the VA records. Does your state offer veterans services. Does it have a facility of its own. Some do. As far as return home, as long as you keep providing the services, your grandfather will return home. You really must make a choice, and be honest with the physicians. |
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thanks for clarification, exhausted wife. now I understand better... 6/27/1950 is given as the starting date of the Korean War. so, if someone's military service was during the conflict which preceeded the war, they would not receive the same benefits. sorry that I added my confusion there, Darby. this site also has more info about eligibility: http://www.vetangels.org/frequently-asked-questions/ |
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Update on Grandpa.... Hello all, I'm writing today with a heavy heart as my grandpa is going on Hospice Wednesday. We met with the skilled nursing home staff Thursday and over an hour and a half meeting they told us basically that: he isn't going to get any better. His RBC and protein level are under even low and hit below even where palliative care would be and he won't eat much, he has no strength, can't sit up for more than 30 minutes at a time an can't complete therapy. We finally found out from the speech pathologist that he wasn't aspirating but he was "penetrating," which I guess is small amounts of liquid going into the lung because of a delay in his swallowing. Maybe that actually did cause the pneumonia... since he had the prevnar 13 shot this year I thought it was weird he got pneumonia so bad. Anyhow, he is lucid 75% of the time but so tired he just wants to go back to bed and sleep. He isn't interested in the pureed foods and he says his stomach hurts all the time. In a string of meetings with hospice, VA, several nh staff and confrontations with my grandma, we are moving him to a veterans approved facility about 45 min in the other direction away from our house. It's not easy to get too, lots of windy country roads, but it's the only place the VA will pay his room and board. During the meeting with the therapists, they told us he needs 24 hr care, sometimes 4 people to transfer him and has to have someone with him while he eats because he tried to eat his napkin and drink his urine out of the urinal- all consistent with late- stage parkinson's dementia. So they are transferring him Wednesday in an ambulette, because it costs over $500 for the ambulance to take him to the VA place, so he'll have to sit up in his wheelchair for the ride  Also, I know the move will be hard, because of the dementia etc. I honestly don't think he'll make it too long after a move like that. My sister is flying in from out of the country for the weekend. He has really been a warrior through all the ups and downs of parkinsons, but its so heartbreaking to watch him go.
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Darby, so sorry. At least hopefully he will be getting the care he needs. Actually you are lucky that the facility is only 45 minutes away. The closest one to us is two hours away. I know that doesn't make it any easier for any of you though. You are such a remarkable young woman. I hope you can find some peace in the difficult days ahead. |
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| Bless your heart, Darby.you are a special young woman. Jane |
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Darby, you and your family remain in my thoughts and prayers. It is sad now that your grandpa is in his final days. Hoping you will still have some rich moments with him, of closeness and remembrance, rejoicing for his life and love. Even if your grandfather cannot speak or move, he can still hear you when you sit beside him and talk or pray or sing. When my Mom entered hospice care her doctor told my Dad that she might be waiting for permission to die. It might help your grandpa if you tell him it is OK to let go when his time comes. Reassure him that you will take good care of your grandma. Stroke his head. He will feel your presence. At the end of her earthly life my Mom could not lift her hand to make her own sign of the cross so I would touch my hand on her to be able to feel. If there is a song or reading from a book that gives your grandpa comfort, he will hear you. God bless you and yours. |
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| Many thanks to all of you for keeping us in your prayers. Grandpa is still on hospice but refuses to eat much. He had to get a catheter from a huge lump in his belly that we determined after an x-Ray was a distended bladder. He sleeps a lot of the day and only gets up for a half an hour or so a couple times a week. He's had a lot of visits though from family and friends. Hospice even did a special veterans pinning for him, which was really nice. |
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Update on Grandpa. My grandpa passed away peacefully on Saturday, 4.23 in hospice care at the nursing home. We were all there with him as he took his last breaths. He started some gasping type breaths on Saturday when we got there and within about an hour started the Cheng- Stokes breathing. One of the last things I said to him was that it was okay to rest now and we would take care of grandma and now he could be with Hallie (his daughter- my aunt who passed away from cancer a few years ago.) After that he took his last gasp and we waited... but another one never came. |
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| You were a blessing to your Grandfather. Bless you and may he rest in peace. |
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| My condolences to you and yours upon your loss |
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| May your Grandpa rest in peace. May you find peace as well. My condolences to you and your family. |
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| I am so sorry about your grandpa, and hope that you find peace in the days ahead. |
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Darby, I'm sorry for your loss. You took such good care of your grandpa. It sounds like a good place he was in. the ceremony to honor him as a veteran was special. He must have been happy for those last visits with his loved ones. It is good that you could be with your grandfather at his passing. You were always there to care for him, to comfort and reassure him. Grieving is hard work. Sometimes you may feel very tired still. I hope your grandma is doing OK. I will continue to pray for you and for all of your family. Please take good care of yourself. Mary |