My Mom is 84 and has severe copd. She had heart surgery 6 years ago and was not able to go home after a 4 month rehab so I found an assisted living facility (researched tons, moved her in, managed the clean out and sell of her house etc). That first year I was visiting her in the hospital 4-5 times a week and then in the assisted living facility 2-3 times a week. I was afraid she was going to die and I wanted that time with her... well here we are 5 years later I am just tired.
She has gotten progressively worse and while she does not live with me, I am really the only family she has locally so everything is on me. I run her errands weekly for things she needs , manager her bills, orders from amazon, take her out to lunch every so often etc.
I work full time and have 3 kids - 2 in competitive club sports and I am feeling so resentful these days.
She was in the hospital in March and then again last month and now she is in rehab and we are deciding if and when she can go back to assisted living but I’m back to visiting her or dropping things buy 4-5 times a week and I’m exhausted.
I have one brother who lives 2.5 hours away who visits occasionally but that is it.
I'm sad and tired and work out and feel so guilty.
Her lung doctor told me last week that she is very very severe but at the same time can hang on like this for a long time and to see her decline is killing me - both emotionally and physically.
and if I have one more person tell me I should just be glad to have my mother still on this earth - I’m going to lose my mind.
Ive cared for folk in Rest homes with COPD and they seem to have either two personalities.
One very pleased with any help they get as they fight to breathe
and then there are those that hate the world that owes them everything and why cant they go out for that smoke.
But take away the umbilical cord of 4l/min of O2 and they start screaming and wailing. Explain their O2 SATS are over 94% at that rate and they have been prescribed and need only 2 litres when sleeping and its like one has cut off their fingers one by one.
Six years later they are still doing the same scenario
As far as Im concerned your children are what you owe your time and efforts to. and once a week to do any purchases or chores. And one visit to drop off and say Hi.
Yes it is hard, but you should not need to be shouldering all the responsibility
Just wondering about the choice of Assisted Living.
COPD: Is she on continuous oxygen? Has she had pulmonary embolisms and is she taking blood thinners? Does she get nebulizer treatments? Does she use a one-time a day inhaler? How is her COPD being monitored, tested, to see if it's getting worse? How often do they check her SAT level? If she is taking blood thinners, how often do they check her PT/INR?
Severe COPD (or advanced COPD) should make her eligible for a Nursing Home.....a higher level of care than Assisted Living. Because she already cannot do at least 3 ADLs, or else she would not be in Assisted Living. Right? At least that's been my experience.
My mother has had COPD for a long time and has been on continuous oxygen for over 4 years. I had to learn, the hard way, about what care level she needed. At this point, I still do not know everything, but I feel confident that I know about the differences between the care level for someone with COPD at home with health care aides, and at AL, and at a NH.
What are you running around buying for her, 2-5 times a week?
This is what I do. Because I got tired of the 2-3-4 times a week errand thing. I get what I can on Amazon.com or Walmart.com, enough for 1-3 months, or in some cases, even 6 months, bring it to my mother when she needs it, and for the extra, found room in my apartment (little laundry room) for a 3-drawer plastic thing with big drawers, from Walmart.....and that's where I put the extra supplies for my mother. So, for example: when she says "I need that _______face cream" well, guess what? I already have a jar in my apartment stash. Same thing for almost anything she wants for personal supplies. And, incontinence supplies.
Makes it so much easier. Gonna have to buy and pay for it anyway, eventually, so why not just stock up? Sometimes I keep the extra big things of incontinence supplies in the trunk of my car, in a big Hefty Bag.
Yeah, you have to be creative.
I have realized I need boundaries and if that means having extra help some way some how this is what I do. Guilt is a feeling and we try not to live with bad feelings. We have to do what is right for us to stay happy healthy and connected with our family. Without these we will not even be good for ourselves. I never thought I would have to be a caregiver for my sister but I am. I’m sure you never thought you would be a caregiver for your mother.
If you know in your heart that you are doing your best then tell the world to buzz of or come help.
Good luck we all need it.
It's time to back off again. I'm 75 and retired, but twice a week visits is all I can handle. The less I visit, the more involved she becomes with activities and the other residents at the facility. Only occasionally now does she call me about being lonely and abandoned. That's when I suggest she call my brother who lives in town and ask him to drop by or take her out for a meal.
BTW, hospice isn't the end of the line anymore. The cardologist explained to my mother about hospice and made it sound like extra care, which mom appreciates, not the finale. If she doesn't like the caregivers, or the service, she can cancel at any time.
I’ve heard of others say that the patient doesn’t need to know it’s hospice. How does that work? My mom would be inquisitive. I don’t see how I could be sly about it. Any tips? I have considered hospice before.
While I feel bad for those who have lost a LO and who wish they had more time with them, statements like that *really* don't cut it. You won't hear it from ME!!!! Actually someone I know hasn't lost her mother yet, but chastised me saying someday I may miss the sound of her voice.... Same idea. We never really had a lovey-dovey relationship. I care enough to ensure she is well cared for and safe, but will I miss her like that? Time will tell. I do have reasons to know that I likely won't miss her voice (hate her accent and her criticisms, her pig-headed, semi-racist comments and so forth!)
I feel for you as well. My mother has dementia and was moved 3 years ago to MC near me (she lived 1.5 hr away before.) While like you most of the running around, picking up supplies, making and taking her to appts, and managing everything falls on my plate: finances, coordinating clean out, clean up, fixing up and sale of her condo (3hr just to get there and back!), thankfully it didn't happen when I was younger, single and raising my kids plus working full-time (2 jobs for a while!)
On the flip side, it did happen about the time I was laid off and chose to retire early. I was also caught between 2 houses - didn't have money to get either ready for sale! That plus helping her when she was still in the condo and then taking care of everything else, it IS getting in the way of things I would like to be doing (not travel, just being able to fix things I can manage in this house I bought, making things, visiting my only grandchild, etc.) I realize that sounds selfish, but I am somewhat reluctant or hesitant to plan ANYthing because that's when I'll get a call and have to deal with something related to mom (sick, pain, UTI, needs more supplies, etc.) I have 2 brothers. One isn't local (likely won't be visiting and even if he was, he isn't welcome here anymore), the other is younger, still working and forgets sometimes that he should be involved in mother's life instead of just doing all the things he does outside of work!
So, I do hear you. Different circumstances but same end result. It does tend to wear you down and out!
What is it that she needs 4-5 times/week? If possible, try to reduce the visits to 2x/week and coordinate the visit with something needed. I would imagine she is perhaps lonely, so the visits are good for her, but if she's in rehab, are her needs not met? Once she is stable and can either return to AL or some other LTC facility, try to stick to that visit/delivery schedule. I tend to defer a trip to pick up something I may need or want until I have a reason to go in that same direction for something else (saves time and gas - would even do this when I was working.)
Even though she is older and has fairly bad medical issues, unless you feel you might regret not spending more time with her now, while you can, I would recommend the cut back in number and/or length of visits/deliveries. Try to find a happy medium between resent and regret.
You are soooo right!!! No, I will not miss mine either. 94, she has been here at my home 2 years and she still thinks I do nothing for her and if she's "too much for me here" she "will go back to her HOME". She will NEVER have any clue what it takes because she is NPD and she is "perfect".
Oh, and no, I do not feel like an awful daughter. No point both of us feeling that way :)
we had her care plan meeting yesterday and the goal is to get her back to AL in about 10 days. She can now walk about 20 feel with O2 and a walker so I want to try to get her back there - but am very cautious and aware it may not last - but I have to try:
We have a ‘practice day’ next week where she will visit her apartment with the OT, PT and staff to figure out her routine and the best way to reconfigure her furniture to accommodate the O2, commode etc.
i talked to my brother and he’s going to come down the day she is discharged from the rehab and bring her back to AL and get her settled. He actually offered and i now think I really do need to ask him for specific help instead of feeling like her care is all in me. Why do I do that? Why do I assume it’s all on me? When she first got sick 5 yrs ago I was home full time with my kids so it was a bit easier to take on her care but I went back to work and while I love my job - it’s a lot of stress too.
i plan to visit on Friday as it’s her birthday and then do the practice day on Monday and then maybe go next Friday after she is back at AL. I think having the days planned out will help me not feel like I have to go more.
Yes, there are those who've lost their parents and probably miss them, who think you're very, very lucky to have your Mom, but if they could walk a mile in your shoes I think they'd totally understand your stress levels.
It really sounds like you need a holiday and I think it's time you started to plan for one. I've found that by asking for help my burden feels so much lighter and I can start to live again. My Mother now has cleaning, ironing and someone to drive her to the hairdressers, and I just pick her up.
A one hour visit three times a week while your Mother's in recovery, and then twice a week once she returns to assisted living sounds like enough, especially as you have so many responsibilities.
I remember visiting my Mother every day for six hour stints for seven weeks when she was in hospital and I nearly lost my noodle. In the end when she was discharged, the nurses were all saying how she must be really happy to be going home. Instead she said she quite liked it and didn't really want to leave. That was because I was making her lunches and dinners because she didn't like the hospital food, sitting doing crosswords with her, getting her cups of tea and cold drinks, bringing in tidbits to entice her to eat and she just loved the attention. I have vowed I will never do that again. I would cry most days from mental exhaustion and come home just wanting to sleep. If my husband wasn't around to help, I would've been certified.
It's our duty to take care of our parents (even though some children do nothing), but it's not in the job description to make ourselves depressed and sick whilst doing it.
Try to step back. Cut back on the visits. Pay the bills over the net, and shop only for necessities and perhaps try to do it fortnightly.
Keep your sanity. Good luck.
It amazes me that so many of us on this site have/are experiencing the same life. Sad that so many of us didn’t have a loving mom.
It is so hard to watch someone you love particularly a parent decline. Some are able to handle it better than others and while it may just be convenience or laziness on your brothers part it may too be just something he hasn't figured out how to handle, not that that makes it any easier on you. But this is also why peoples well meaning comments about how lucky you are are so hurtful, infuriating and off base. These are people who have no idea, they haven't had any experience in watching a parent decline, become a different form of themselves or a shell of themselves for some and have no idea how hard that is. In many ways a quick passing is far more of a blessing the problem of course being this limbo of when is quality of life enough to work for it and when is quantity of life far surpassing quality. My response might be "you would think so" or "if she were still the mother I remember I would feel luckier but I will always love and care for her" or "yes but it sure doesn't get easier". They still wont get it but perhaps they will reconsider the next time they are tempted to say that to someone, they still mean well they just don't know what to say, it's like when someone dies or is fired I guess, people want to say something to be supportive they just don't know how to accomplish that. Anyway try to just dismiss it for what it is, ignorance or simply inexperience. I think this will be easier for you if you can shed some of the load, share the responsibility and take a break even.
Watching someone you love suffer COPD, struggling to breath, not getting enough oxygen to the brain and the multitude of medical issues that often accompany that is a particularly hard thing to watch too. If she isn't bed bound and is able to get around some, helping her get involved in activities at the AL, finding and facilitating her using the other options for help like rides, someone to do errands etc might be hard at first but if you are busy with things that prevent you from getting there more than a couple times a week or less and she really needs these things she will adapt. "Mom I have been where I want to be with you in the hospital and no one has complained but the kids really have given up a lot to enable me to spend the time with you, now that the crisis is over and I know your safe I really need to give more of my undivided attention to kids & DH for a while so I have set up these options to help. I can still be in touch (by phone and or video) and you can always get in touch with me I just wont be stopping by every day so if you can't wait we have these options"...If it's time for Hospice set that up. Let others support you however they can.
I stopped believing that the majority of her care was "on me." If and when the time comes that she needs more help, someone will be hired. I have grown children and grandchildren and one grandchild on the way, and I want to spend time with them, along with travel, and so many other things. Your life counts! You decide.
You might be able to find volunteers to visit (through non-profit organizations or a church).
It is difficult to face guilt and unresolved feelings from a parental relationship (or any family). Once you realize or choose to put yourself first and realize you DESERVE to do this, you will feel much better physically, emotionally and other ways. Remember, too. It isn't necessarily the amount of time you spend with her, it is the QUALITY of time. Make shorter visits really meaningful by being present. Otherwise, the time (and energy) spent w her goes to guilt and resentment and isn't quality time.
* * *
I also have a brother NEVER visit, lord. I think it is like 1x in a year or 2,
or "2x times in a yr. and a half. horrid. Yet, he claim to "love the folks."
Worse part:
Even if you're not able to for whatever reason come and visit regularly, or at all,
just call weekly multiple x a week. No excuse, IMO(in my opinion)love is shown.
REAL love is ACTION.
Simple as that.
But,
i do not let it bother me, as i know my parents would love it more, he the oldest too. But they are happy each day when he does not call or visit because i am ensuring they smile, remain stress-free, and happy each passing day.
I am the baby of the family, born last during the decade 1970s chica, so i understand what you're saying, however, i am never 1 to get "sick and tired of it all, by caring for mi father."
-
I am the only one in mi ENTIRE familia, doing so, gladly, proudly and most of all, effortlessly, but i get your point,and i will just say, try to make time you you chica.
-take some time made for yourself, the children, your family.
-try to relax as best you can "each second"while your loved one is resting themselves.and good luck to you, god bless.It's hard yes, but i am finding it more easier, than "getting harder"because i think about ALL of what mi father, mi hero has done for me, and my daughter's, our familia, (his grand-daughters) my 2 girls and our family as a whole,
is a great father, grand-father,great grandfather, diagnose @ 83 in january 2017.
Never was sick barely a cold in 8 decades, so i am proudly his caretaker with mom.
He is such a great man who would do the same for me, God forbid,if that was me, and i know he appreciate it more than ever, and i get him out 3 to five days a week for SUNLIGHT which help the brain in so many ways and his overall spirit inward,health,body mind etc, and i love to see him SMILE, my mom and i, always, and laugh more and more and again it's all effortlessly done, on mi part, so i am not tired of it at all.
adios.
You have reached that magic state when a Licensed Social Worker or a GOOD psychologist with some history of life him/herself can be invaluable, because you need now to sort out what you can and cannot do. The man who helps my bro most at his Assisted Living says that guilt is what they deal with all day long. The guilt of loving families, and the more loving, the more guilt. And how sad it is to know families have to go through it.
You are only one person. You need to sit down the immediate family at home and ask what burdens they can help with and remove as well.
So sorry you are going through this.
I understand you 100% on this. I truly love my mother, but my life is important, too, and so is yours.
It sounds like your mom should be in a nursing home due to her level of care, or maybe even have Hospice ordered, where she is, or in a nursing home.
Brother used to go almost every day when dad was first put in, but I noticed he has burned out too. Don't feel guilty. You could also talk by phone instead of many of the visits. Your kids need you more.
What stuff does she need? I found out that asking for things all the time is just an excuse for trying to control you, trying to get you there! ignore most of her demands, because she's doing it because she's lonely.
If she's in AL, ask caregivers there to get her involved in activities, giving her other things to do. Ask brother to visit at least once a month.
My other two brothers live far away, so they never visit. Doesn't bother me as long as they keep quiet about his care and call him once in a while.
You need to put yourself and your kids first.
What was your Mom like before all of this? Did she need/want you to visit as often before? Maybe she does not need to see you so often. I ask because I spent more time with my Mom since the stroke that in the last 10 years as she was independant and liked her space and quit/alone time. So it was me that chose to be there with her so often and many times she told me it was ok for me to go! So I've rambled on.
It's all very personal. While making your Mom comfortable, get your 'me' time in, even short meditations (I know, easier said than done) and find/use all the assistance you can get, even friends to spend time with her. If you let her know why she will hopefully understand if your involvement/visit schedule changes, after all, I'm sure she wants the best for those grandbabies, too. I hope your brother is pitching in as much as he can, even in other ways, such as arranging for additional assistance; share your feelings with him if you haven't already. Feeling your vibe and wishing you, your Mom and family the best 💖