Weary of Caregiving

Although I haven’t posted since Feb 2019, that doesn’t mean that all has been resolved in my caregiving life. My husband has had followup at Mayo regarding pancreatic cysts that were an incidental finding on scans he had done during his January hospitalization. Long story short, after local doctor appointments, local specialists appts, three Mayo evaluation appts (with some frustrating coordination of care issues), he is scheduled for a Pancreaticoduodenectomy (Whipple) Surgery. We are hopeful and grateful for the care of Mayos’s practitioners. We now can also be grateful for his hospitalization last January that resulted in the discovery of his pancreatic condition, while it is apparently still in a precancerous state. But this past year, which started last September with a heart attack and quadruple bypass has been challenging. In addition my aged mother, who lives “independently” but only with much assistance from me, has had her own health issues and needs more assistance. I am feeling stretched thin. I am taking proactive steps for self care, investigating use of calming essential oils and scheduling an appt. with a therapist to talk about my emotions relating to the challenges of this past year, but unfortunately can’t get in for an appointment for another month. I know my husband is dealing with his own emotions and I try not to burden him with those that are my own to deal with. He doesn’t want to hear my distress, shutting down my occasional release of frustration when one more difficulty presents itself. Perhaps it only heightens his own feelings that he may find difficult to deal with, reminds him of his present frailty after a lifetime of health or even makes him feel guilty (unjustifiably so) that he is contributing to my burdens. I don’t know, but it leaves me feeling alone and even wrong for feeling frustrated. I’ve always been the strong one, the one others turn to and depend on, the one who knows what to do. Right now I’m not feeling that way.

@susan2018 You have had a plateful of things going on! Good for you for taking steps to look after yourself, and understand that you need to have an outlet. Have you asked your husband about some joint counseling, so you may be a united team, and explore how best to approach all you both are facing? We care here, and would like to hear from you again/
Ginger

Hello @susan2018, I so appreciate your honesty as you have expressed that you are "feeling stretched thin," This is so understandable! As @gingerw said, you do have a lot on your plate right now and I'm glad to hear that you are working on some self-care with counseling. I would also encourage you that you get out of the house with friends to see a movie, have lunch, etc. You might check to see if your community offers respite care so that your husband and/or mother do not have to be left alone while you get away for a while.

Do you take walks or do other exercises? There are great YouTube videos, completely free of charge, that can lead you with yoga stretches, Tai Chi, chair exercises, etc. Take a look and see what might be helpful.

Susan2018,
I know what you mean about being stretched thin, not that my life is the same, but I am dealing with a husband with Alzheimer's Disease and vascular dementia who has been in a care center for over 2 years that is 45 miles from our home. I visit every other day. My youngest son, age 60, has been diagnosed with early Alzheimer's disease and although I don't have his direct care to be concerned with, it is still a concern and I try to help as much as possible. He is unable to work and is waiting for his SS disability to be approved. The government works very, very slowly and he has had to resubmit much paper work and jump through many hurdles with the help of his spouse. I hope this is approved soon. He has contacted our US Senators and has engaged an attorney but the wait is still hard. It shouldn't have to be this way.
I could go on but I won't burden you will all that has happened in the past year in my family. Almost too much. I almost want to say "If I didn't have bad luck, I'd have no luck at all".

Take one day at a time, and the suggestions made by others will help you through. Family and friends are useful at this time. Don't be afraid to ask them. They are just waiting for suggestions on how they might help.

@susan2018 I know that we’ve corresponded in another discussion group and you seemed upbeat. But I went back further and it seems that you were reaching the end of your rope. How are you feeling now with all your caregiving? It’s always tough being the “strong one” isn’t it? I used to say, “but who’s taking care of me?” Has the therapist helped at all? Please keep in touch-I worry

@becsbuddy, it was so nice to see your note. As I have written before, a year ago my husband was in the hospital recovering from quadruple cardiac bypass, some complications and a two week hospital stay. Then in January he had a two week hospitalization for some persistent GI issues. During that time scans revealed he had cysts in the head of pancreas, and he was referred to a local specialist who in turn referred us to Mayo Rochester. At that same time my 93 year old mother, who depends on me for help in order to maintain living on her own in an apartment, was recovering from her own hospital stay. We have been on a roller coaster, first expecting a cancer diagnosis for my husband, then after a biopsy thinking perhaps he would escape the diagnosis ,but after a Pancreaticoduodenectomy/Whipple surgery on August 28 getting the news that in fact he had pancreatic cancer arising from an IPMN cyst. We’re home but it’s slow going, the hardest being extreme fatigue. He isn’t able to walk as much as I know would be good for his recovery. I worry that he will not recover to the degree necessary to begin the gold standard chemo at the earliest possible time. Every day brings a new problem for me to solve. And I’ve had a couple bad night’s sleep because my husband’s CPAP machine has been acting up and making noise that awakens me. Today I’m running on three hours sleep. I have done all that I know to gather a support system around me and did meet with a therapist this week for an initial assessment in an attempt to do some self care. I have received support from women in an organization I belong to but have no relatives living nearby who could help. On the one hand, I think I’m doing well considering the circumstances , but on the other hand I recognize that if I saw someone else dealing with what I currently am, I would be considered about their wellbeing.

I think im getting weary ive got my husband with TBI who is pysically and mentally abusibe a mom who is going down hill a son who is in trouble with the law .and anotber son who is having relstionship troublels with a baby... I some times dont know which way to go ....

Hi @kw1904861 I remember a bit back you posted your husband had hit you in the jaw. Have you reported this to the authorities and are you now in a safer place? I certainly hope so. Your life is obviously overflowing with demands. I hope you place your physical safety as your number one priority.

Im still at home ..i just told his dr about him hitting me..im not sure why im still here ..

@kw1904861 You certainly have a lot on your plate right now. I know it can be really hard to just think of yourself when it all gets like this. It sounds to me like you’re the strong, supportive one in the family—are you? What did the doctor say when you told him that your husband was being physically abusive? Any helpful advice for you?
My thoughts and prayers are with you always. Get outside and soak up some sunshine