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Need encouragement/ support.

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I read comments from so many who seem to be coping well with their role as a caregiver. I'm not. I'm exhausted. I'm going through the motions of caring for my loved ones and facing the possibility of having yet another to care for. I am not superman. I love these people and want to make them comfortable in their old age, but I cannot find respite. While I can find someone to care for one of them, they will not care for the other two. I'm not really looking for solutions, just need to know that I'm not losing my mind (or maybe I am). I feel like I'm failing the people I love. Thanks for listening.

Burnout Family Caregiver Respite

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dlpandjep: You're welcome.

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No one person can do this. I don't care if you'd be superhuman, you need to reevaluate your situation. Praying for you. Good luck.

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Thank you - I appreciate your prayers. 💜

(1)

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Been reading all the comments and I'm so grateful to every one of you for caring and sharing your wisdom and concern. It's been a very trying day so I'm calling it a night. Blessings to each one of you - and all of us who give and give and give....

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Hey, we're all on the same page as you...especially those of us doing it alone. We're tired, brain dead and overwhelmed the majority of the time. Many of us are walking in your shoes, but like you we have see no other choice. We just have to keep putting one foot in front of the other. You aren't failing anyone, however you could be losing a marble or two just like others posting here.
I haven't found respite or help on a regular basis. I do manage to give a very advanced date for a week off in the fall for an annual trip with some friends. Even then I have to listen to the bickering over one sibling saying if another doesn't help then they won't either. I don't get in to the middle of that and if it comes up I tell the complainer - not sure, but I'll be gone so figure it out.
Oddly enough, when I return I hear - I don't know how you do it and I'm going to start coming to give you more relief. Relief comes the following year. I find no point in becoming bitter with siblings because I just don't have the energy for all that anger. Bite my tongue and just move on.
Each day that you rise you are providing love and care for your family. It is a huge gift to them...although draining for you.

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Going to bed now. Been a long day. Thank you for taking my hand and walking with me for a few seconds - you made me feel like I'm OK...… 💙

(4)

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I am having a bad day and my mother is in AL. I really am not bossy or overbearing and now there is a terrible communication problem with us and the director of AL. It seems as all roads lead back to her yet I feel now too much negativity has passed between us. Anyway this is a hard road physically felt by many and emotionally for others who just can't come to terms with certain issues.

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Good morning Riverdale. I hope today's a better day for you. Hugs. 😊

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My dad refused to consider moving out of the family home after a stroke disabled him. So Mom did all the work of caring for him including getting a job at age 80 to pay the bills since they had no savings and SS wouldn’t stretch to cover their expenses.

They made it work for several years until she fell and broke a hip. Dad didn’t want home aids or anyone coming into the house to help out. I flatly told him it was the only option since I had no plans to be the maid or caregiver. I took over the financials, interviewed and hired help, scheduled medical visits, dealt with hospital and emergency room stays, everything.

All this in addition to a full time job that entailed frequent travel and weekend meetings. I can’t imagine adding physical and housekeeping chores on top of all that!

Residents in AL or SNC get round the clock monitoring by staff who get to go home after an 8 hour shift. Can you imagine expecting them to work 24/7 the way you are? It’s inhuman and no one should be forced to do that. As caregiver you are responsible to ensuring you LO gets the best care for him/her and that includes making hard decisions, standing firm, and asking others for help.

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You make your point very well. I've always been too submissive and I'm learning that caring for others requires a little more "backbone", so to speak. Bless you for standing firm with your dad - that was so unkind of him to put your mother through that! Kudos to you Frances! Thank you for your comment.

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Hello,

Please re-evaluate this situation that you are in. It is not working. Trust me, I have tried it myself and all it does is destroy our lives and negatively impact those around us.

I bet you feel like you have lost control. That’s how I felt. In reality, you have lost control. I did too. The good news is that you can get it back.

Please speak to a therapist for yourself. It helps tremendously. Also speak to doctors that are involved and any social worker that can help you.

Find out what is available as far as help for now and in the future. Nothing stays the same. Diseases progress. It will become harder, not easier. Stop thinking something is wrong with you and that others cope better.

Accept that no one would handle this situation well. Change your reality. It does no good to continue thinking that one day everything will fall into place because you are hoping to learn to ‘cope better.’

It’s better to learn to be proactive and learn all that you can and find ways to help everyone involved, that includes you! You matter just as much. Ask yourself, would you want everyone to sacrifice their entire life for you if it were you in their shoes? Most likely not, so realize that they are asking too much from you.

Of course, you love them and deeply care but you are giving more than you have. Now you are emotionally in debt. Start paying yourself back by making time for you. That isn’t a luxury. It’s a necessity.

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Great comment! I hesitated to ask this question, but so glad I did. I feel like you've all just wrapped your arms around me and told me exactly what I needed to hear. Thank you!

(1)

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Choose only one of these three, imo:
1) Have a husband/wife relationship.
2) Or be a caregiver for your husband.
3) Or Lose your sanity.

Add more to the mix, and just check off #3 now.

(Some of us are more vulnerable and as caregivers are challenged
to do more).

The role of Care Coordinator is a good place to be, but it can be stressful too if you aren't afforded decision making authority.

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Think I've already checked #3. No, seriously, I realized when I asked this question, that it was time to reach out for help. I'm taking steps. Thanks for your comment. 💜

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Dlp, I'm curious what plan your husband and father have for their care if you dropped dead tomorrow?

I think you are past the point of serious burnout and are running on fumes. (I've been there).

Have your dad and husband always treated you as part of the servant class?

I know that sounds mean, cruel, awful, but I can't picture a loving husband demanding that his wife care for him AND 2 others and NOT see that she needs some help from "outsiders".

Please think about the fact that you will not be doing anyone any good when you are hospitalized.

Get in-home help and what the others think? Who cares? You're in charge.

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You are such a joy, Barb. I always look forward to reading your comments. I spoke with someone yesterday about basically the same things you mentioned. I have a responsibility to plan ahead and I'm thankful for friends on this forum who care enough to "enlighten" me. 😊 Thank you!!

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You are probably not failing the ones you love - your post shows caring and concern for them. You are in danger of failing one person you should love - yourself. You need the same basics covered that you are doing for others: adequate rest (usually 7-9 hours of sleep), adequate nutrition (3 meals with protein, produce, carbs...), adequate hydration - WATER!, medical needs attended to, time with friends, and time off from work. Please get the help you need: friends, family, volunteers from place of worship... and paid help. A healthy balance looks different for every caregiver. You'll know when you "get it right" when you feel adequate to the tasks for the day and maybe a return of joy.

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Thank you Taarna - I do get adequate rest. I know how very important rest is and everyone in my household knows not to wake me unless it's necessary! I look forward to putting the "kids" to bed so I can relax and unwind. You praise, encourage and counsel/admonish like a psychologist!

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The stress or feeling like you are loosing your mind is a sign that something needs to change. It's best to see the situation as the failing health of your mother, father, and husband and not your failure. It sounds like you have done your best so far.

Here you are getting the support and encouragement to take care of yourself now. Find respite however you can after your mother is settled. This is a time of adjustment for your father. From a balanced mind, you can move onto the next steps of finding the best care for each of them as their needs will only grow.

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Thank you Pasa. I know you're right. I talked with a counselor today and she gave me some advice for local support. Bless you for taking the time to care.

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I read your profile and feel your exhaustion. You’re going to literally break if you try to keep this up. Please know that honoring your parents means to be sure they are cared for, not to have to provide all that care yourself, neglecting your own life and health in the process. You say the VA has offered help for your dad, take it! And hospice has offered for your mom, take it! Take all help you can find! Get a firm diagnosis for your husband, the first step to getting help is naming it. I’m glad you reached out here, I hope you’ll not reach out locally and find ways to lighten your load. An exhausted caregiver isn’t best for anyone, that isn’t judgment on you, it’s just a fact that no one can be at their best and provide great care in this position

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Dear caregiver. Please know you are not alone. My husband is early onset. I mostly feel i lack understanding and support. Maybe you could look to me if you need to talk.

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Thank you! You are very kind. 💜

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DLP, I'm exhausted just thinking about the task you have undertaken.

You are doing the work of three shifts of young, trained, well-rested caregivers who go home after an 8 hour shift.

Please ask yourself what will happen to your 3 clients when (not if) you fall ill or die.

I understand leaning on God for support, but we human and have limits.

What are your mom and dads financial resources? Are they eligible for Medicaid? Hospice? Can you use their resources to pay for in-home care for them so that you can concentrate on your husband?

Can your husband afford to go to an Assisted Living facility?

Have you tried brainstorming this situation with a social worker or geriatric care manager, or with an advocate from the local Area Agency on Aging?

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Hi Barb - I've talked with Home Health, VA and local Senior Centers. I even had a woman coming in at one point, but my husband didn't like having someone else in our home. He will not even consider AL. Said he plans to die in this home and that's not open for discussion. I plan to show your post to my Dad. Yesterday he told his nurse that, "She's tired all the time - I don't know why, she doesn't do anything."
God give me patience! Thank you for your concern. 😊

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Keep one thing in mind, whether you take on another or not, it's not going to get easier. In fact the burdens will increase significantly. If you want to know if you are losing your mind, no you are not. Welcome to the world of caregiving. Now if you need solutions, I am sure many people can offer those.

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Thank you doctor. I appreciate your encouragement and after 6 years, I am all too familiar with caregiving. 😊

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You cannot take on another person. The stress of 3 is enough. You aren't going to like what I say but, if ur parents can afforded it put them in nice Assisted Living. If not, if Moms Dementia is such you are now cleaning her up, you may want to think Medicaid and LTC.

Your responsibility is to your husband. And he needs your attention. And believe me, the majority of us do not do well with Caregiving. We do it because there is no choice. Or, we had it dumped in our laps. And parents are too stubborn to go to an AL or allow outside care. Its a hard job caring for one and sometimes 2 but not 3. Me, I have no patience and I overwhelm easily. I had my Mom, with Dementia, and she was fairly easy. I was 65, just retired and taking care of my grandson when I had to take Mom in. No siblings near by. I was trying to sell her home to get her into an AL. It didn't sell but I took what she had and placed her. Such a lift off my shoulders. (My house was a split level not good for someone who couldn't do stairs)

PLEASE, don't take on caring for someone else. You can not physically or mentally spread yourself that thin. That person is going to need to find another answer. And your answer should be NO. I have enough with the 3 I have. I cannot possibly take on someone else. And if the person gets mad, oh well. They aren't, or their family isn't sympathetic to what ur doing. They are trying to find the easy way out. I can even imagine that you would even be asked. You really need to lighten ur load u have.

I remember someone posting that they had been caring for, lets say, their parents. For years, like one passed but she still had the other until that one passed. She was really glad that part of her life was over and she was moving on. I think her question to the group had to do with a relative saying that now she could take care of an Aunt since she was so good at caring for her parents. I think she wanted to know how to go about telling this relative that NO she was not caring for this Aunt.

I can remember thinking when I was younger how people could place a LO in a NH. Back then there were no ALs. The nursing homes did not have the activities for residents like they do now. I now know why. At a point you just can't do it all. And you will eventually need to realize this. Moms Dementia will worsen. Dementia goes hand in hand with Parkinson's. Dad will worsen. What is going to happen to these 3 people if something happens to you.

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You've made some very good points - and I know you're right. As I mentioned above, there may come a day when I have to place one or more. My life is a succession of poor choices - made in ignorance and a lack of guidance. I never should've agreed to care for my parents, but it seemed best at the time. Here's irony at it's best: my parents have been apart for over 50 years and my Mother wouldn't be here if she had her mind. Now they're spending their old age together. Thank you JoAnn.

(5)

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My brother and I have 3 to oversee, they are all in AL, that is how we cope. We have a weekly visiting schedule and we stick to it unless there is an emergency. They are doing well in AL, actually like it, having made new friends, lots of activities and shopping & restaurant trips. Not to mention 24/7 care for them.

Works for us, we have no need to have them live with us or us live with them as neither my brother or I are clinically trained and have no desire to give up our lives for them.

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You've made wise decisions, DollyMe. I don't have any formal training either. But I've learned more than I ever wanted to know about caregiving. There may come a day when I have to place one or more in AL. Until then, one day at a time. Thank you.

(5)

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Thank you. And thank you for the hug. I would normally be in church right now, but I can't pull myself together. I guess I'm having a pity party.

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"Coping" is learned through trial, error, and help from others. Learning as much as you can about each of the health issues that your mother, father, and husband face is important as a first step if you haven't already done that. That leaves out guessing what their needs actually are and adds a bit of order to their care. Mainly though I think what you are doing is actually impossible and anyone would be burnt out taking on so much responsibility. Please continue to look for more help.

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Thank you ArtistDaughter. I have been learning and will continue to seek answers. The VA has offered to help with my Dad - but not the others. Hospice will help with my Mother - but not the others. My husband hasn't been diagnosed, but his physician sees him regularly and knows his condition. (House calls) I guess I just needed a sympathetic ear. So many people say they care and they "understand" but no one can understand until they've walked in our shoes. Thanks again.

(6)

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Others are coping better because we don't have 3 people to care for.

Please consider your wellbeing before adding a 4th person.

You have given them all a wonderful gift, just don't lose you in the giving. You matter as much as any of them.

Great big warm hug and prayers for you!🤗

Need encouragement/ support.

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