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If so how do you take care of your own physical issues while taking care of your love?
I have had Fibro , chronic fatigue and autoimmune issues for about 10 years. It has become worse over the last year . Now mom is ill and I am trying to balance .

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I'm going through that right now. My mother doesn't understand that it's become more and more difficult for me to do things for her. She lets her laundry pile up and expects me to do it for her. I tried to get someone in to help, and she won't have any of it. It's hard enough for me to do her grocery shopping and carry the packages in for her. She then uses the old, "Just wait until you get to be my age" guilt trip on me, and that just crushes me every time.

I hope that we can find a solution to this. I understand your pain, in more ways than one.
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Hi sallie,
My Mother is also dying with COPD and is on oxygen 24-7I am so sorry you have your own health problems on top of taking care of your Mother.I have 2 brothers who never lift a finger to help too.I quit hoping for them to grow up and face reality.My Mother and I live together along with my husband and pets.I am 54 and Mother is 85.I just wanted you to know that I get your situation and I will include you in my prayers.Take good care.luckylu
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I would recommend you google Dr. Terry Wahls. She also has a Facebook page with lots of information. Short story, she had MS and was in a wheelchair. Took matters into her own hands when medications were not helping her. Studied nutrition and changed her diet. Found out food allergies, eliminated dairy, sugar and gluten. She is now healed. Out of her wheelchair and riding horses. She isn't the only one either. Her diet program, The Wahls Protocol, is helping people with fibromyalgia and other disorders. I have RA and when I follow the Autoimmune Protocol of the Paleo Diet (no nightshades and also eliminate all the above) I notice my joint pain goes away. I also lost 35 pounds in 5 months. Read and study. I just might change your life.
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I have a severely messed up back which has left me in severe pain 24/7 for 15 yrs now in back and legs. I have now developed fibro and experience migraines. I have multiple other health problems also. I am taking care of both of my parents who, after a hellish yr., are now in an assisted living facility. My mom has dementia & Parkinson's and dad is in early stages of dementia . I am the only help they have. I'm trying to take care of all of their Dr. appts. and finances and insurance, etc as well as mine and I'm totally overwhelmed. I spend half my day n bed laying down to get relief from the horrible pain. When you're in so much pain it makes it difficult to concentrate, think, make decisions and visit my parents as well as take care of myself and my home which is a disaster rt. now. Can't hire anyone as we have no money and I'm doing best I can but wish I could do more.
It's good to read the answers to above question. It really helps me.
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Oh God Bless You! I will be praying for you. I have been severely I'll for 18 years and to many doctors...told it was so many things...well found out 2 months ago it was advanced limes disease. I have constant brain fog, fatigue...been very hard. My two severely disabled parents live with me. My dad is 85 severe stroke, wheelchair bound and needs help with everything. ?..and is a handful and not nice. My mom is 81 and uses a walker need two hip and two knee replacements, bone on bone. She has congestive heart failure, gout, diabetes, needs wound care which I do and is a sputnick to care for. I can honestly say I hang in there for the love of Jesus. I need to have something to offer up in life and this is it. This life is never free of suffering but if we embrace the cross we can carry it easier.

Some may not agree, but that is why I do it..out of duty, love and loyalty. It helps with keeping Jesus in mind and what he had to suffer.
I did manage to get to good fibromyalgia doctor that is very well known and I do not know if I can give his info here. Let me know because I can tell you his name and he has done wonders for fibromyalgia, chronic fatigue patients
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Commo, me and my husband are retired too. My husband is 58 and was able to retire from the Govt because he had enough years in. We planned on traveling because we are still young. I'm 53. I really didn't retire, just went to being a substitute lunch aide after doing it for 8 years. We can't travel much because of my mom's condition and sometimes I regret not being able to get up and go like my one sister who goes away often. She doesn't have a care in the world. If I want to go away I have to make sure there is someone to look over my mom and get her mail. I have to make sure all her appointments are taken care of and she us stocked up on food. I can't even fully relax while on vacation and call her every day.
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commochic, instead of bringing Mom home, you go get your knee replaced and you go to rehab for a couple of weeks. Allow at least 4 months recovery. It will feel like a vacation after all you have been through. It did for me, anyway.
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You are all amazing. I am in need of a knee replacement and I can't lift as much weight as I used to. I care for my mother. My mother is 95 and in fairly good health, but she had two serious falls lat year and is currently in a rehab nursing home. This time she fractured her knee cap and shoulder. I go to the nursing
home every evening and I do her laundry. My 87 year old father visits with my mother from 11:30 till I get there around 5:00, then I stay till about 7:30 so I can accompany my mom at dinner. My siblings don't help much. Their excuse is that they work. I'm recently retired. When mom is discharged, she will be coming home to me, again. Again no help. Sallie, I have also begged for help. .still waiting. My niece and my son are the only ones willing to give my dad and me a break. I'm just venting. I'm resentful that I don't have a life of my own and I'm not doing all the things i planned on doing "when I retire".Not sure why I picked tonight to vent, but thank you all for being here.
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Samara -- The middle class is in trouble on so many levels. Don't get me started! I hope you find your spouse. Did you check the laundry hamper? :) Bettyb21-- I have looked into Meals on Wheels and would consider using them if I get in a predicament like before where I am too sick for caregiving. Good idea. Thank you both for you responses. Take care and be well!
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terrygma
what about Meals on Wheels? do you belong to a church with an auxiliary? The ladies in that group might be able to pull together a schedule to get a meal to your dad at least once a week. Can your weekly caregiver get some meals together to freeze for him? or just put in the fridge for the next day.?
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Catcoker, I hear you, it would be so great if there were help provided for non-welfare patients and their caregivers. I provide care 3-4 days per week for free, for my folks in their 90's. Thus far it hasn't been too awfully hard to do, just a giant juggling act between them, me, my self-employment, my kids and oh yes I have a spouse (somewhere....). In order to have state help with caregiving they would have a huge spend-down, and even then my state doesn't pay family to do companion care. It just seems totally silly, there has got to be a tax deduciton or something, at some point. Its sad to see seniors who have scrimped, sacrificed and saved for 50 or more years, be told they don't deserve any help from the government they dutifully paid their taxes to. Oops don't mean to get political. Bu I think every one can appreciate how some seniors have been oooh so very careful with their limited funds, and were being totally responsible, not spending on lavish homes, cars or vacations, and they deserve to be able to spend their twilight years in some comfort finally? Or are we suppose to spend spend spend and then apply for welfare? Seems there is literally no middle ground.
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Thank you for asking this question! I've read all the posts and you obviously hit on something that needs to be addressed. So many of you have horrific situations much worse than mine. All I can say is your courage in the face of your own illnesses is worthy of a medal! I am 64 years old and I have battled/managed ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) for 20 years. It is a poorly understood, very real illness that took me out of the workforce. I am ambulatory but I am on disability. I have been my mother's caregiver since 2007 when my father died. She lives with us and is now 87. I am exhausted beyond belief. I was flat-out in bed for two weeks starting on Christmas Day from a bug (viral or bacterial- no way to know for sure). My mother came down with pneumonia at the same time but thankfully, she is recovering at home. By the the way, 100% sure she got pneumonia at her doctor's office where there was an outbreak. She refused to wear her antimicrobial mask. (Available on Amazon and in drugstores). Anyway,
I was not able to care for her when I was sick so my partner was doing double-duty, coming home early from work, etc. It was stressful and she has health issues too. Apparently, here in California, Medicare will only cover respite care for caregivers of family members with Alzheimers. Hiring home help is very expensive! If anyone has any tips on how to get financial help for home caregivers in California... I would love to know. Thanks again for the post and for "listening." I hope everyone feels better soon!
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Oops! I just re-read what I wrote. I have never been good at proof reading... at least not BEFORE I hit send!! :( lol. I meant to say, I am ONLY 46, but feel much older.... Not old 46. Although I guess now that I think about it, that would make me an old 46, huh!
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I also have fibromyalgia, Chronic Fatigue, Scoliosis, Bone Spurs, Arthritis, Tendonitis, etc. .... I am old 46 but am feeling much older. I care for my dad who will be 90 next month, my mom passed away before Christmas a year ago. I guess I don't have answers, but I am taking a measure of comfort knowing I am not alone!! (Misery loves company?!) lol. Sorry, wouldn't want to wish this on anyone. Hope you get feeling better!
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Suzanne50...Just remember that "to care for another who once cared for you is one of the highest honors." You are surely loved and appreciated more than you realize.
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BLESS YOU and all of us with our own struggles... PLUS being a primary caregiver to a sick/aging/elderly parent... Can you imagine adding to this mix, your/my MS and the autoimmune disease MCTD (Mixed Connective Tissue).. AND a 94 1/2 year old mother who is also a "borderline personality disorder"/narcissist...? WOW! Am I tired? You bet I am. Am I thankful for a group of good folks like YOU... who care to read these messages and commiserate, who offer suggestions and ideas from your personal experience... with kindness and compassion? YOU BET I DO! I know you do too. Hugs to all... and no... pat... answers... XOXO
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You can't be a good caregiver if you're not taking care of yourself and your health issues, which are clearly being impacted by your role as caregiver. You can't help your Mom if you collapse or something worse. As much as you might hate the idea, there comes a time when you have to think seriously about placing a loved one where they can get care and it won't literally kill you. When I started getting palpitations -- which eventually led into Afib -- I knew the stress was getting to me and that I could not only no longer be an effective caregiver, but that my own health was being severely compromised. My relative got better care in a facility than I could give. Not a good situation for anyone but sometimes it's the only real solution. Best of luck!
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Please forgive the immediate repost, but I forgot to add, since shopping is a big deal anymore, I have begun ordering from a program we have. You simply order and once a month pick up the food. I order for the whole month for myself and my Mother. Then for other things that might be needed such as ketchup, mayo, etc., I hit the Dollar Store, in and out quick or the local farmer's market when I'm running another errand. I don't miss going and dragging groceries from the store. In our area there is One Harvest program it is open to all regardless of monthly income. I'm sure if you do a google search you will find something in your area.
Blessing to you.
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Suzanne50, I have several autoimmune diseases including lupus and UC. I've been my mother's soul caregiver for 7 years now. I can tell you one thing - get respite help NOW! Ths situation does not get easier. As you know, stress is a huge factor in these illnesses and caring for someone else is incredibly stressful. Contact your local Area Agency on Aging to help you find respite care. If you get sick, who is going to care for your mom?
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You've been given some very good responses to your question. I'd like to add to this as I too have my own physical limitations. I have Fibro, Chronic pain, neuropathy, autoimmune diseases, etc. Long list of medical issues. First as everyone has stressed take care of yourself. If not, you will risk flares. On days that I cannot get moving well or am having more than usual issues, I slow it all down. Everything is slowed down to a crawl unless it's an emergency. I have an extra cheap cell phone for just my Mother to call and I tell her if I am trying to get rest not to call unless it's an emergency. That way I don't have to deal with listening to the other phone to see who's calling. I tell friends I'm not available and please call another day. I make sure my Mom is set up that day and if there's not easy/fast food, then I call and order something (pizza, sandwiches, soup, salad).
If there is something that must be done then I reserve the energy for that only and then set the day to a crawl.

I've put all my Mothers bills on auto pay through the bank which does not cost anything extra and give me piece of mind in knowing they'll be paid on time. One less thing to worry about. I try to pay my bills once or twice a month to not worry about those. My Mom highlight of the day is checking the mail. So I let her but she was calling every time telling me it was something that could not wait. She cannot tell the difference in junk mail or an immediately needed taken care of bill. So now I set up twice a week 1/2 hour to take care of anything of that nature. Which usually isn't needed due to the auto pay. Every now and then something will get missed and come to the house.

Also for maintenance and outside yard work, if I cannot handle it, then I've been told to get people from daily labor as it's cheaper, however I'm afraid to do this so I usually just wait until I am able or hire a neighborhood teenager. If all else fails, then I wait until family/friends come along and ask for assistance.

I hope some of this helps. Stay positive my friend. :)
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I also have fibro, as well as some other issues. The key is trying to get good restorative sleep. Yeah, I know, good luck with that! Also, don't overdo any one day, or you'll pay for it the next. I was having a much harder time managing everything than I am now, but then my husband retired, so now he helps me out a LOT. One of the things that he does for me is the shopping. I have a really hard time doing that - partly because of the fibro, partly because of my bad hips. But if there are things that you have a hard time doing, and you can get someone to help you out, go for it! It has been so much easier on me since he retired! We're poorer, but happier, I think. Good luck!
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The answer is simple - you do the best you can bearing in mind that if you yourself become so sick that you can't take care of your loved one at all, then you are doing that person a dis-service by noting trying to care for your own needs now. I know this is easier said than done but it's not rocket science. I have my own health issues - high blood pressure, a brain aneurism, recurrent dizziness and headaches and at 65 am becoming tired after physical exertion. At the same time I have my 88 year old mum who has dementia and is immobile because of strokes and arthritis so she's sofa-ridden. I moved her in with me almost nine years ago because I could see how difficult things would become if I continued to have to move in between my house and hers, and that was a very wise decision even though it has its downsides. However, I found myself gradually feeling trapped both physically and emotionally and after much counselling and advice from many others who had experienced a similar existence I realised that there were two needs in the house - personal care needs in respect of my mum, and my care needs in respect of my own need to rest and get away. So, my local authority budget (am in UK) is divided into two portions, one for mum's personal care (washing, dressing, etc) and one to allow me to get out of the house and take a holiday. This has been happening for the past 18 months and I feel much more able to cope - problem comes when I get a crashing headache with dizziness and have no alternative but to lie down until it passes. There's no solution to this, mum just has to be on her own until I'm well again, but seeking proper help to give me time off helps me to keep these headaches to a minimum so that the times when I have to go to bed and be 'off duty' are not so frequent. Good luck
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It's really an issue! I believe I read somewhere that caregivers tend to face physical issues more than other people because we neglect our own health. I've got my stuff to deal with too (back issues) and I have put it off for four years now due to my time commitments and just mental bandwidth. Unfortunately it got worse while I was neglecting myself, which led me to gain a lot of weight, which led to worse physical problems. I'm slowly getting back on track. Wishing everyone well.
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Mom and Dad in their own home. Mom blind, Dad early dementia. At 85 they are both in good health otherwise. They are not demanding and are always nice and respectful They don't drive so I take them out everyday to the market or differing medical appointments. Each morning is the same. I drive over and upon entering the unlocked house Dad asks me if the door was open so I could get in. (sometimes he asks me what I was doing in the basement?????). I make sure they have good food to eat and that their finances are in order. Mom dusts and Dad vacuumes then I clean the bathrooms, kitchen, cabinets, windows etc....

My Wife and I sold our home to move into an expensive apartment to be within walking distance of their condo. (My wife works full time and is a pure angle with my parents. As a note I am also the guardian of my mentally retarded older brother.

Me personally:
Stage 3 Emphysema (24 Hr. O2)
Chronic Pancreatitis
Diabetes
Ongoing Skin Cancer
Partially Amputated foot
Fybromyalgia
IBS
Chronic Insomnia
Hypertension
Hyperlipidemia
Manic Depression
Chronic Lower Back Pain
Alcoholic (Non-Drinking)
I won't go into all the medications I take for these conditions and diseases. I will say that it is my choice to help my parents. A good number of days it is tough to get out of bed and face the day Usually it is like the movie Groundhog Day where Bill Murrey wakes each morning to the same eventually boring or frustrating day. Now some days are wonderful. I wake up with no pain and feel I can conquer the world, these are the days that I cherish being with my parents. Nothing they say or do frustrates or irritates me. Over the years I have found that taking my medications as directed, getting a good sleep, and having a wonderful Wife to vent with make me able to help my parents. Thank you for letting me vent a little bit.

Al...
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Dear Suzie, I feel you, girl. I have those same issues & am currently on chemo too. There are some things even those w/ dementia understand. My Dad is not severe yet & can still change his diaper & shower himself. I found that the more I did for him , the more demanding he became. He also would hold me responsible for "His lack of care." What I mean by the latter, is for example, he wants me to drive him around and has his meds called in to Walmart. But, has them sent to a different Walmart (On purpose, I believe), so when we arrive, they are not there. He will then, go in the store & get something he needs instead of going to the other Walmart immediately when the transportation is offered. I still have a child in school & may make mention that I have to pick him up in 45 minutes or so. He will refuse to let me call & transfer the meds to the Walmart where we are & refuse to go to the other one. Saying, No. We'll go tomorrow. Guess what happens the next day? We get to the other Walmart, & he switched them! "I don't know why they keep screwing up," he'll say, "We'll just go tomorrow." Again, he refuses to let me handle it my way & insists on doing things "his" way. When I tell him, "I can't tomorrow, Dad." He says, "I'll get your brother to take me." If he can't go the next day, he tells everyone we know that now, he's out of meds & has no one to take him to pick them up! Everyone wants to know why I am so mean! UGH! So you see just one detail of care-giving so time-consuming, that a person can literally consume every minute of the day w/ the endless tasks at hand & in my case, often never achieving many of my goals w/ Dad, because of the tail-chasing time I would spend. I just had to stop it all and say, "NO." That's it. I t told my Dad & my family & friends this: " I have had an these chronic illnesses for many years. My Health is getting worse. I am taking this time for a few months, a year, however long it may take, to get well. This is my time for it & this is what I'm doing with it. After that, I will be able to work full-time again, travel, move away, ..... "(Examples of my goals after I am well I given here). I also let everyone know that I love my family & I know they wish me well and that I will not apologize for getting better. You know what happened next? I'm doing it now & getting better! My siblings are taking up the slack (Or the bulk of his care, I should say), & everyone is doing great. I)Decide what you need to do to get well 2) Decide what you need to accomplish that goal 3) Formulate a plan 4)Put that plan into action 5) Make a list of goals for when you are well. It's amazing all of the wonderful goals & dreams you can think of when you start to dare to think you will still have a life ahead of you and ask yourself what you would like to do with it! (Big grin on my face). Go for it!
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Hi Suzanne50: I have an 86 yr old dad I'm taking care of long distance. I do have help in my ex sister in law so that is a plus. She lives with dad and makes breakfast, lunch and dinner most days and she does some housework too.
I have RA although it is mild but I haven't been taking care of myself (fell of my healthy diet) and so now my joints are back to hurting. My 16 yr old son had type 1 diabetes and so we have to watch over him too. Dad has dementia and needs a knee replacement but his drinking is preventing that. So, he sits on the couch and watches tv and drinks his beer. He is becoming more inactive which I am sure will not help his health.

So, all the above answers are good. Take care of yourself, try to get help for the most stressful things and know that you are doing your best. I am a people pleasing perfectionist and have had to learn to let a lot of things just go and not fret over them. Maybe when this season of life is over then I can be a better housekeeper or fix up the house again. Until then it can wait. God Bless.
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Better get some help!!! My mom is now 92. I've been her sole caregiver for years. She refuses any help to me. Not even an aide to help bathe her or a sitter. I have migraines, degenerative joint disease in every joint and discoid lupus. I never have a day off. She has dementia and the sundowners that goes with it.

So take care of yourself. Believe me you will regret it if you don't. Get help for both of you. God bless!!
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God bless all of you for doing what you do. I am not nearly as sick as many of you, but do have type 2 diabetes uncontrolled. My 87 year old mother took care of my dad, also diabetic, so she understands. It is still a challenge to eat properly, exercise and care for yourself. Like many of you, my sibling is useless. I think the best advice here is to see what services your city or county can offer, so that you can get relief. It is not selfish to care for yourself and don't let anyone else guilt you. Caregiving is very hard and we can only do so much before burnout sets in. Walking is my favorite way to deal with this. Gets rid of the cobwebs! Hugs and prayers to all.
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My complaints are 2 knees that I really need to have replaced, bulging discs in my back, 2 arthritic shoulders that I've had rotator cuff surgery on twice and a neck that has a mind of it's own. Some days it's fine, others I can hardly turn. I was running every day for dad. A ride, the food store, the bank etc. Finally I told him that on Monday, Wednesday and Friday I'm not available, I have therapy on my knees. I don't, but I need that time for myself. I'm widowed and have nobody but me to do what needs to be done in my own home. I spoke to his doctor and mine and both agreed that in order to do the best for him, I had to take care of myself too. I'm sure as his dementia progresses, I will have to have someone in to care for him those 3 days, but remember, you're no help to anyone if you're ill yourself. Even a couple of hours away from the situation will make a big difference. Plus......I'm moving in May. I'll be about 20 miles from him, where I"m 5 now, but I can't find anything affordable in this area and living with him is out of the question. I ordered Phillips Lifeline for him just yesterday. That will help ease my mind too. Little steps to take care of you! Best of luck!
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I was diagnosed with Rheumatoid Disease in May 2011, a few months after my mom passed. The signs were there since I was 50, but testing wasn't complete enough previous times, I guess.

My mother had Rheumatoid for years & was bedridden at home for almost three years before she passed. She was also bipolar & refused virtually all medication except acetaminophen & senna laxatives. She was often angry with dad and me, then a visiting NP prescribed Excelon patches which could be applied without her knowledge. What a diff during those last five months, the ones I was here full time for her & my dad.

At the age of 68 I still provide virtually sole care for my father in his home. One sibling periodically will bring some food for variety & homemade quality. Another lives in the south & helps when she visits, but that's not often. Four others are hostile & have caused untold problems for my dad & me, so he isn't too interested in their visits. One of them was told not to return. Legal pursuits have been in progress , costing him thousands to date with no cooperation from that one. Another's child stole in excess of $11,000 from him & now blames him to avoid remaining restitution of over $6,000.

I am divorced & have two sons locally, both with many challenges of their own. They help whenever they are able, but that's not often.

I handle all - house, yard, and snow shoveling except when it's too deep for me to manage.

Dad is a pack rat & won't let me eliminate many of the items yet. The house is large & pretty well filled, but not a safety hazard. Many rooms are storage only, so he isn't at risk trying to move through them. I am slowly clearing what I can, including donating what little I have left from my past life.

Dad is not one to allow outside help, but he is having more severe mobility problems, so that's likely to change. He's almost 98.

I can oversee help when he allows it, and persist in reminding him my hands, wrists, and feet can only do so much. No washer repairs, etc any more... :-)

As his POA, Trustee, and intended Executrix I also manage his financial & legal matters, including his legal pursuits.

The ideas and feedback from others here are quite helpful & comforting.
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