What is the one thing that bothers you the most about caregiving?

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What is the one thing that bothers you the most about caregiving?

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My mom wants to be waited on hand and foot. She has terrible bouts of diarrhea and messes on herself. She rinses her clothes out in the bathtub and hangs them to dry instead of telling me and letting me put them in the wash. She keeps telling me she is showering but there is never a towel and her hair always looks dirty, its to the point I have to tell her if she wants to go somewhere she has to shower first. She can still get around with a cane but she is very slow and refuses to be put in a wheelchair. I am burnt out, I cry, sad, we have had to miss my husbands family reunion, our yearly trip to Florida because she doesn’t want to go to Florida. Its what she wants to do or we do nothing. I have 2 sisters and 2 brothers and none want to take a turn to give me a break. My husband is a big helper, he does what he can for her, he takes care of her banking and her doctor appointments. I couldn’t do this without him. Our grandsons will not visit because she “ weirds them out” whatever that means, they live an hour away and I haven’t seen them since February. Mom told me yesterday back in her day when you got old your kids automatically take you in. I want my life back, I am in my 60’s my husband is 70 and we deserve to enjoy what time we have left. I hope I don’t sound selfish but after she passes we may be to old to enjoy the things we want to do.

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Reply to LindaO57

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That’s too bad. Maybe you should encourage your husband to go to his family reunion without you, He’s probably very disappointed .

(6)

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No freedom!
My DH needs 24/7 care due to brittle diabetes, incontinence, bleeding wounds, heart attacks and falling risks from a traumatic brain injury.
We have wound care, PT & OT 2x weekly which are invaluable. But I need to get away, alone, for at least a week after 19 months of full time care following his brain injury and surgery.

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Reply to NOLAnana

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It all depends on the day. as of today is the repeated over and over and over questions with the same answers (ughhhh). The loss of my personal life 2nd. The financial drain 3rd. And now the new twist the rebellion and aggression towards me 4th.

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Reply to SusanHeart

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its a roller coaster and very demanding and depressing job. I feel sad that my life is so different. Thought retirement would be our golden years, and along came Parkinsons. I love my husband and he sure didnt ask for it but the job is endless. Managing house, shpping, cooking , finances, meds, endless dr visits and appointments-its overwhelming . Even with help i feel like i live in a “nursing home”. Hes a fall risk and so has to be watched and constantly reminded to “not back up”
has had fractures, utis, numrrous cuts and scrapes - didnt mention the loss of friends because of limited mobility

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Reply to Kk9251

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I understand you. It’s also unfair, because in the majority of cases it’s the wife helping her husband (because he’s older, so he got sick first). I’m guessing your husband is older? And by the time you need help, it’s not sure who will be around.

This happens to many women.

(5)

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84 y o Mom makes poor financial decisions and had to sell her house (to a friend, she's still living in it/paying him rent.) She has enough money to buy a new smaller place but wants a unicorn: One story, no stairs, garage, but a condo/townhouse so they'll pay for roof and maintenance, within a few miles of her old place but close to medical facilities.

This doesn't exist. She calls me every day wanting to talk it to death for hours but I can't wave a wand and make her perfect living situation happen. I can't seem to get her to realize she'll have to let go of at least one of these "wish List" items. Anybody have an elderly parent in a place without a garage? How's it going? We live in the mid-South so storms are more of a concern than cold weather.

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Reply to Hellebore7

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Find your mom a real estate agent. They do this for a living. Not your job.

(9)

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LightnLife - by saying you're making it work, you mean it works for mom, but it seems to me it doesn't work for you/spouse/children. In any case, glad you come to vent. We all need to do that sometimes.

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Reply to polarbear

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Reading again, answering again after nearly 2 years of care for my mom. What bothers me most is the separation from my husband and all my kids. We are living in two different states and making it work. I'm not looking for sympathy. We chose to make things work after a full family move became impossible either way. It is bothering me the most right now. I am grateful for the space to say it. It feels good to put it out there. That is all.

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Reply to LightnLife

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It is horrible to live that way. I know from having lived apart from my husband for 8 years because of my sister in laws care needs. Things are better now for us but it was tough time.

Only thing to say is each day is one day closer to your ordeal ending.

(3)

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The one thing that bothers me the most is my dad thinking I should drop everything for him and not really wanting me to be happy.

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Reply to faithfulbeauty

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I know what you mean, my mom thinks if she’s happy then everyone should be cheerful and happy. While she is sitting on her butt knitting or watching endless hours of tv I wam cleaning, cooking, do all the laundry and waiting on her hand and foot and she wonders why I am depressed, tired and just don’t want to go anywhere on the spur of the moment.

(5)

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Wow the non awareness for the caregivers is a common thread here. I thought i was alone. With my dad being constantly rude or all about him 24 /7

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Reply to Gonnastinkitup

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The non awareness is very common

(7)

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My parents didn’t do any caregiving for their parents so they truly didn’t understand how hard it was for me to do caregiving for them.

I wonder if most parents who did care for their parents, if they expect it from their children. I have told my girls that I never expect them to do caregiving for me.

My caregiver days are over but I felt like they would never end. It’s a hopeless feeling.

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Reply to NeedHelpWithMom

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Some elderly truly don’t realize how much work it is to care for them . They lose insight , or are in denial . They think they are independent . They are very focused on their small world .

(16)

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The one thing that bothers me the most is how I’m treated. Also, I want my life back. I want my life to be 100% mine.

It seems right now my life is CO-OWNED.

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Reply to verystressedout

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It is essentially co-owned!

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Not being able to spontaneously do something.
Having someone in my house ALL the time.
No alone time.
Having to redo what she's done.
Repeating everything I say, multiple times throughout the day.
Cleaning $hit off the toilet and the floor.
Having no support from siblings
Oh... Just one... I have so many....

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Reply to BeeSuz

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Oh BeeSuz I hear Ya!!
I agree with everything you posted except about the siblings, I have none so I do the above alone.

(1)

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“3) my favorite . When you would run into another daughter who was also with her Mom and you give each other the nod.”

:)

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Reply to ventingisback

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Actually I didn’t mean any envy. I meant I understood how it’s possible they’re laughing, so cheerful. It’s only possible because they have no elderly parents they’re caregiving for. You see it clearly on their faces.

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Reply to ventingisback

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Venting ,
Oh , yeah , you are right , it’s a realization that your world is different .

On another note ……, I remember I would take my Mom to the store , and I would get “ one of the looks ” from other shoppers .
1) the pity look
2) the why do you have that old lady out look
3) my favorite . When you would run into another daughter who was also with her Mom and you give each other the nod .

(11)

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Venting ,

Ah yes, envying other’s lives. Some of my friends totally escaped any caregiving and are enjoying life . I also happen to be younger than most of my friends and they are retired . They have time to do whatever they want . I don’t have time to join them. Meanwhile DH and I work and have been caregiving on and off for many years . First my parents and now his .

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Reply to Way2tired

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And the thing is that my parents didn’t do any caregiving for their parents, so they didn’t understand how hard it was for me.

(10)

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You know what’s weird?
I’m at the mall right now. I see all these happy, laughing people. And I’m thinking, “Yeah…they don’t have elderly parents. No wonder they’re so cheerful. They have zero stress.”

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Reply to ventingisback

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Personally, I think it's worse with a husband. Seeing happy people living normal lives and I eat my heart out. my 24/7 burden is never ending.

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Venting , I believe you . (((Hugs)))

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Reply to Way2tired

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I know I know…I’m just kidding.
Unfortunately.

(1)

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You’ll never believe me, but today is an “ugh day”, too.

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Reply to ventingisback

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Everyday is an ugh day

(8)

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Drum roll…!
Will tomorrow also be an “ugh day”? The suspense is killing me.

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Reply to ventingisback

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Yes. It probably will

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I want to confirm that what Msblcb confirms is correct.

Another “ugh day” strikes again.

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Reply to ventingisback

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I can confirm that you have so many “ugh days” that you start trying to count the infrequent “good days”!

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Reply to Msblcb

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I can confirm it’s possible to have a long streak of “ugh days”.

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Reply to ventingisback

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(Again just venting; not looking for feedback).

In a bad mood. Already feel better just having typed that. Ugh. It´s an "ugh day". It´s been a while since I had a good day. I wonder how many "ugh days" one can have in a row. I can tell you, I´m a pro.

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Reply to ventingisback

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What bothers me the most, is that my life’s a mess right now. (I’m just venting; not looking for feedback). I helped my mom a lot. My work is chaos: I don’t know when it’ll be OK again. I really don’t like chaos. I’m one of these orderly, organized people.

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Reply to ventingisback

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My husband was diagnosed at 40 with young on-set Parkinson’s Disease. He passed at 64. We were married 39 years but the last 10 years were very hard. The final 5 years were extremely rough. I often felt that my life was only about pee and poop. He also had psychosis with delusions and hallucinations. I mourned the loss of my husband when he was still there. But it wasn’t him. I worked hard to meet his needs until the end.

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Reply to Beeninyourshoes

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I’m so sorry. I think it must be doubly hard when it is a spouse.

(5)

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I feel very similar. My husband is relatively young, 74. He is hydrocephalic. His dementia comes and goes, along with some anger issues. I have been taking care of absolutely everything! Him, the house, the yard, the bills, the taxes, etc. etc. I have a very bad back, so some things become difficult for me. But, if he wants help, or sees a dirty dish, or is hungry, etc., he can't understand why I haven't taken care of it. This frustrates me to no end!!!

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Reply to LNorman

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I hate when there are compound crises and everything just snowballs. Today was that day. The smoke situation in NYC is beyond awful. My mother woke up short of breath this morning and needed to use oxygen for the first time. That was upsetting for her and for me.

Then I tried to put her air conditioner on to filter the air only to find it wasn't turning on. It was working just fine the last time it was used but of course today, when the air quality in NYC was the worst in recorded history, was the day that the circuit breaker gave up the ghost. Why do things break down at the worst possible time?

I am thankful that it is fixed but I'm still so stressed and upset about all of it. I wish I can calm down but I can't.

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Reply to Hothouseflower

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Wishing & hoping the air quality improves quickly - thinking of you. (((Hugs)))

I try breathing through a wet face cloth when there is bushfire smoke about.

(4)

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I provide total care for my husband. He has stage 4 Emphysema, diabetes with severe neuropathy in his feet/legs. He is alert but mobility is an issue. With assistance he uses a walker to move from bed to lift chair or bedside commode. I finally with encouragement from his MD put him on long term Hospice care. Yes, I have a lot of anger issues. He is a retired RN but refused to take care of his medical issues when he could and should have and now I have to give up my life to care for him. (I have extreme GOOD health.). Oh I forgot to mention his alcohol and gambling issues. (No gambling now) So now I keep him on a strict diabetic diet, do not allow drinking and we argue about my bitchy ways. My elder years are being used up caring for him and my anger is because he did this to himself. I get mad at myself as well for not being more forgiving. 57 years and I can’t seem to get past my anger.

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Reply to Dragonlady2

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My heart goes out to you. I can relate to the anger you are experiencing with your husband. My husband is also a retired RN who also has a plethora of medical problems including diabetes, hypertension, and heart disease. The problem in my case is that my husband is a narcissist. I have lived with the regret of not walking away from this marriage 40 plus years ago. Some people wonder why I stayed in my marriage, but it is for financial reasons. While I have bitterness toward him, I am angrier and bitter at myself for staying in my marriage. His narcissism has caused me to be on psychotropic medications, and I have been in counseling for it also. As a RN, my husband has had years of experience dealing with patients in hospitals as well as nursing homes and yet he has no plan in place for now that he is old. He expects me to be the one to take care of him as he told me that he does not want to go into a nursing home. Well, I have news for him as I am planning to put him in a nursing home and walking away once he becomes a candidate. Because of his narcissism, he has pushed everyone away. I have no empathy for him as he has no empathy for me. Whenever he complains about being in pain or any of his medical ailments I just get up and walk away. I still continue to cook his meals as I don’t want him burning down our home, and I also do his laundry. I am looking forward to the day when he becomes a candidate for a nursing home and I will, without hesitation, put him in the nursing home and I will move on with my life.

Perhaps it’s time to put your husband in a nursing home and move on and enjoy YOUR life. I pray that you will somehow find peace and happiness that YOU deserve.

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I am sick and tired of home health companies. They don't pay their staff well enough to attract high quality candidates, they don't train them enough, they don't educate them and how to comfort and upset or angry elder, they don't do anything if a caregiver doesn't show up, the turnover rate is impossibly high.... I could go on and on and on.

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Reply to aj6044

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i had the same bad experience. even thieves. so i searched and searched for private caregivers. interviewed many candidates. found very good ones. so far, they're genuinely good.

(5)

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The one thing that bothers most is that I'm an only child and I do not have anyone to share in the care giving. Everything is on me. I'm taking care of my needs ( which often go undone) and my dads.

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Reply to faithfulbeauty

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That must be difficult for you. My daughter is also an only child and my current situation managing my 95 yo parents last years has made me think about this. I have one sister who is really helpful and the other not so much. This situation sucks big time. To be honest we’ve been at this for years and it can’t end soon enough. It makes you realize you need a plan.

For my older years I plan to go into assisted living and rely on paid help. I want my daughter to live her life to the fullest, travel and enjoy her grandkids without having to deal with my crap. . If I see her a few times a year for a brief visit that’s fine with me. I am not going to encroach on her life. I didn’t have her so she could be my nursemaid.

Actually hoping I just drop dead of a massive heart attack well before I reach 95. There is no point to growing this old if you are unable to have any quality of life anyway.

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What is the one thing that bothers you the most about caregiving?

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