Hi there,
I am sorry if a lot of this information comes out a bit all over the place. Lately, I am exhausted from all the goings on.
I have been the primary care taker for my mother who just turned 71 a few days ago. She has had MS for over 40 years, and has been in a wheelchair the majority of my life. The MS has affected her cognition/short-term memory and the way she interacts with strangers and long term friends or even family. She needs help with all ADLs, including some help to feed herself. My father, who is 70, has been her other caretaker. It is very hard, and it has physically taken a toll on both of us, admittedly. It takes the two of us being present at home each day to help her live her life.
As of just a few weeks ago, she ended up in the hospital with a terrible bout of sepsis and UTI. She has a catheter, but we have had trouble with home health nurses changing her catheter properly. My mother was in the hospital for nearly 2 weeks. For the first bits, I wasn't sure she would even get back any of her memory. I know with trauma of infection this can take time. Luckily, she has recovered from both infections, but my father and I have tried to make this a transition into a nursing home facility. It is very difficult for either of us to do this, and even not do this.
My mother is very, very upset with this choice. It is very hard for her. She is used to bathing daily, when the facility will only do it twice a week. My mother is used to the two of us helping her on the toilet, but because of her lack of mobility, the nurses there will not do it for safety reasons. They will just clean her if she soils herself. She is aware of this, and this very much upsets her. I know that I am trying to adjust to this, too, and figure if this is normal. It has not been long we have made this choice, but each day I go in, my mother tells me she wants to leave this hell. It is admittedly not very stimulating for her. While she may be at the mental point of assisted living, her physical condition is so poor that she would not be acceptable in such a place. I feel so much guilt. I know, that either way the options are limited. I am not sure what I can do to help her to adjust. The nurses so far seem to be nice, but I have yet to see them really interact with her much. The choices of these places are limited with medical assistance, and otherwise, I am not sure there is much different when either way, it's "not home". She tells me she rather not live than be in a place like this :(
As a 31 year old trying to juggle a relationship, a new home, my mother's health, my job, and any semblance of stability emotionally/physically/mentally. Is there a right? Is there a wrong?
Any words of advice is appreciated. Do these seem to be things normal in facilities like this? I know, our system has come a long way, but I have a hard time after 31 years of helping my mother, to not feel a little jaded by everything :(.
I am just not sure what to do. I don't think bringing my mother home after such an infection is the right thing to do. I cannot make my father take care of her and demand that of myself, as well. I still feel lost and I miss my mother's presence even terribly.
Continuing to go through life trying not to be bitter.
Thank you.
Sorry for the crosspost.
Your mother has really had two ‘slaves’, helping her to live her best life, and dedicated only to her. That is now what seems ‘normal’ to her. It is not going to be ‘normal’ in any care facility. No facility is going to live up to the standards you and your father have set. That’s difficult for her to accept, and also difficult for you both as carers.
Suggestions might be:
1) Ask your mother to give you a list of the things she doesn’t like, and to rate their importance. What might she be most willing to compromise on? Daily bathing is a habit, but it is not essential and the habit can change. The continence issues may be more important on her list. What else?
2) Check out other nursing homes. What the staff are used to doing (and have time to do) may be different in other places. When you have her ‘importance’ list, you have something concrete to ask other places about. The ‘guided tour’ won’t give you the information you need.
3) The “rather not live than be in a place like this” is a very controlling statement. If she is “at the mental point of assisted living” she may be intelligent enough to see that her demands are a serious imposition on her ‘slaves’. It is actually quite a common statement, always used to guilt the family into taking them home and providing huge amounts of care. Perhaps you can find a counselor or a priest who can talk to her about the reality of end of life. It might help to change her approach to using it as a threat.
4) The normal advice when someone first goes into a care facility, is to cut out visiting for the first week or two. Then the person is more likely to adjust to a ‘new reality’. If you go in every day, she is just waiting to tell you everything that is wrong. It’s bad for both of you. If you feel that you can’t skip visits, you could have a rule about complaints. You will visit, but if she complains you leave. Don’t be ashamed of making it clear how difficult and stressful this is being for you, and how she can and should try to help.
5) You also need time to adjust to the changes in your own life. If you have been caring for her for 31 years, you must have been thinking about her every day for most of that time. This means that of course you will ‘miss her terribly’. You need a chance to focus on your own life. Your father may need to do the same.
I hope that others can add more suggestions. I have a daughter with MS, coping much better, and you really have my sympathy. Love from Margaret.
It is going to be so difficult to advise you here. Without having been in your situation I almost don't know how any of us can have the guts to even attempt to.
Your Mom has become basically helpless, and you and your father have sacrificed your lives to her to keep her home for so long now.
Your Mom is for the most part competent and aware, and yet the two of you cannot go on.
What if this takes your father to his grave early? As in NOW. Because that is the reality you may be facing.
And there's no way I can see that he can mentally and physically go on with this safely, and no way you could ever do this alone.
You have used the word "guilt". Words that we tell ourselves form a well trodden path through our brains. They are so important. Guilt infers responsibility and a wrong-doing that was purposeful with malice aforethought. That isn't you. You don't quality.
It isn't your Dad either. Talk about loyalty and faithfulness; is he not the epitome of all that?
The G-WORD you really need here is grief, and there is grief a-plenty to go round here for your mom and dad. And for you. And there is tremendous loss all the way around.
Claire, when will it be enough? If the answer is never, then you are stuck. But if the answer in all sadness is that it has now to be enough--that you must go on with your own life and that your Dad cannot continue to risk his-- then you have to come to some peace with this.
And after you and Dad sit together then you have to honestly, the TWO OF YOU, tell your Mom that you cannot go on. You aren't Saints. You aren't Gods. You can all weep together and grieve together, and you can be there for your mom as much as you can. There can be an OCEAN OF TEARS, but I cannot for the life of me see how this can go on.
And please, whatever your decisions, when your Mom goes (and she will, whether of sepsis from UTI or pneumonia when she cannot swallow food anywhere but into her lungs) do not weep for her. But know the final peace and relief that the crucible of constant suffering is removed off of you ALL.
I cannot tell you how sorry I am for this, how I cannot imagine it. My daughter had two friends pass from MS. Both in their 30s. One, with the understanding and cooperation of her own husband took her own life. The other died of cancer, and was none too unhappy to be allowed that exit, only wished it had been sooner. MS can be such a cruel disease.
This has no good answer. NONE. It simply does not. And so much in life does NOT have a good answer. This is a grief you will have all your life no matter how you choose to proceed now. You and your Dad, I would suggest, need a GOOD THERAPIST and by that I mean one familiar with this situation, with life transitions. Because this is something I fear has no good answer. And you are going to have to live with the WORST GRIEF there is. The grief in which someone is not gone, but still here, and cannot be helped no matter how much sacrifice you make.
My heart goes out to you.
Feelings and practical realities are all covered here.
It helps me to see a light for Claire her dad and her mom at the end of the tunnel. May this be so.
Sending love.
It reminds me of the show, My 600 Lb Life. These 600 Lb people have become SO selfish and self centered, that they are petrified to feel one moment of discomfort. Therefore, their loved ones are forced into indentured servitude, waiting on them hand and foot.
NO human being has the right to demand indentured servitude from a loved one so their every whim is honored. Life comes with pain, with illness, with unpleasantries that aren't up to someone else to make go away. In reality, a loving mother would NEVER make such unreasonable demands on her daughter and husband! And then use passive-aggressive manipulation techniques to get her way. By saying she'd rather be dead than go to a nursing home is one such technique. It bogs you down in FOG, fear obligation and guilt, to the point you can't possibly place her! That's her entire goal: to prevent you FROM placing her and continue the indentured servitude she's enjoyed all these years.
It's time mother pull on her big girl panties now and let you and dad off the hook for her needy demands. Since she won't do that, it's up to YOU to see the FOG tactics she's using against you and place her ANYWAY. She can choose to adapt or she can choose not to adapt, it's up to her. You can choose to take 1 call a day from her or 25 calls a day from her, it's up to you. But it's time to think about YOURSELVES now and all the sacrifices you both have made over the decades.
If you "miss your mother's presence" you can pay her a visit at the SNF. In the meantime, you'll be able to move on with your OWN life, finally, as it should be.
What's "wrong" is for you and dad to continue this in home caregiving which can kill dad before it kills mom.
What's "right" is to keep mom where she belongs in the SNF, even WITH things not being to her satisfaction, where teams of caregivers can keep her adequately cared for. Nope, they won't cater to her every whim, and THAT'S what she won't like, but that's real life. And she won't be ruining ANYONE'S life in the process of living hers anymore.
Your mother is not being sent away to die -- she is living in a situation that's not quite like what she's been accustomed to, that's all. Bathing a couple of times a week isn't the end of the world, but you could perhaps arrange for an aide to come in and bathe her a couple more days each week if that would help.
Allowing her to sit in urine and feces isn't OK, though. They should be taking her to the bathroom every couple of hours regardless of her ability to transfer. My mother was in a wheelchair in memory care, and while we had the incontinence service for her, I'm not aware that she ever had a bowel accident because she was taken to the bathroom every two hours and transferred to the toilet. That's when they'd change out her diaper whether it was wet or not.
The important thing is to figure out whether she's in the correct level of care, and what you could possibly do to supplement it, if necessary. She's not going to be the first wheelchair-bound patient they've ever dealt with, so you have a right to ask how they deal with those other patients and how they will deal with her. Waiting for her to soil herself isn't one of the options -- make that clear.
You and the nursing home staff are now a team along with your dad, so be nice ask for assistance, offer suggestions, and find a way to make things work as best they can for your mom's situation. What doesn't work and won't work is her coming home. Without 24/7 caregivers, I'm afraid that time is past.
I know of which I speak.
My MIL feels completely independent b/c she still lives alone in her home. a total of 8 people are hands on, on a regular basis to make sure that she gets this.
If one of the 3 major players in this show falls, or gets sick--then she will tumble like a broken stool.
Is is right for kids to give their entire lives up to make sure that their privileged parent is wanting for nothing? Is it right to cause strife within a child's marriage b/c YOU want your kids to be holding your hand at night?
IDK if it's right or wrong--but it's difficult and often ruins relationships that are not even a part of the CG scheme.
Sorry, but nobody is that special.
As others mentioned try to make a list of things that your Mom doesn't like and see if there are ways to fix them. When I did LTC it wasn't unusual for us to care plan a two assist person to be helped to the toilet every 2 hours, either before or after naps & meals, when we got them out of bed in the morning and before bed at night. We often would utilize a bed side commode to make it simpler for all. Somethings might have wriggle room, others won't, it'll take time to figure them out. One big thing is how cooperative your Mom is to working with everyone on those solutions. If she won't cooperate all efforts are probably doomed unfortunately.
Talk to the staff and nurses, see how your Mom does when you aren't there. Is she asking for help to the bathroom, is she being patient if they need to go find someone to help them do the transfer, do they refuse to find help and tell her to be incontinent & they will clean her up afterwards or is she just telling them she's been incontinent? It's a tightrope for all.
While I can understand why you feel guilty, don't let that eat you alive. Do what you can advocating for your Mom and finding solutions. At the same time don't enable your Mom. This adjustment will take time for all of you. Give grace to your self and the staff at the care facility.
You and your father cared for your mom for a long time. Your mother knows that you love her.
This isn’t a situation where you should have any guilt. Of course, you are allowed to feel horrible about your mom’s situation, just keep in mind that you didn’t cause her to have MS.
You haven’t done anything wrong, so there is no reason why you should be carrying this heavy burden of guilt on your shoulders. Let those feelings go. Live your life. In time your mom will adjust.
Wishing you and your family peace during this difficult transition.
I think people that have a disease like this, are so used to depending on someone they no longer think anything about it. Your Mom is to the point she is too much for Dad to care for. 70 is not elderly but the body no longer can do what it did. Dad tires out easier. Is losing muscle tone and doing things for Mom that no person should have to do for anyone.
I agree with the bathing, I like my daily showers. No, she is not getting one on one attention from the aides. They don't have the time. If Mom is a troublesome resident, the aides will only do what they have to for her. A little sweetest can go a long way. My Mom was easy. So the aides loved her. My daughter works in NHs as an RN and used to tell me I needed to let certain things go. And that Mom would not be cared for like she was at home. I had to choose my battles. I would not bring Mom home especially if Dementia is setting in. Yes its sad but you need to go on with ur life. Dad can visit everyday. I knew a man who went and had lunch with his wife everyday. He would stay the afternoon and leave when dinner was served.
heart is so big and loving.
You and your dad have been/are so kind and caring.
I think you're great!
Sending love and blessings and the knowledge that you will have your way revealed to you because your heart is open-may you be at Peace-xoxo
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