Hi AC Forum,
I feel like I run the gamut of emotions on a weekly basis. I think that is a difficult side of this caregiving. Not being able to fully satisfy - or not being able to satisfy for what should be a normnal period of time. And on the same token know that each day you go down this path you just running to the finish line.
It's the craziest and horrible life as I am not able to live my life, yet I have a hard time thinking of my mom living with less. Also not being the face of which she says to at first seeing her and asking her how she is, "Better now that I see you!" Knowing that you are the comfort in their sight. Yet what it takes from one feels enormous - emotionally, monetarily, physically.
How are you doing?
LastOne
Our county Dept on Aging was very helpful. Sent social worker to explain things. In no way is this an easy journey. Keep us all posted - you are not alone .
I started hiring someone to assist my family when I was in the hospital. After that, because of back trouble I decided to continue hiring someone to help me clean house 1-2 times a month and keep up my yard, both of which I have always done by myself. I adjusted my budget to accommodate that at least for a little while longer until my back allows me to return to doing these things myself.
I always have people offering to help me. That is the one thing I don't do so well is accepting help, unless I can pay them for their assistance. I have been told over and over that I need to accept offers for help, as it is something others really want to do for me. I am still working on that.
My husband attends 2 memory care activity groups each week that are 4 hours long each. I also attend a support group once a month that is very helpful and supportive. I recommend it! It's a chance to share my situation and hear how others deal with coming issues. In addition, I attend online and in person training sessions throughout the year. These have provided me with a toolkit full of resources to use if needed in the future and I keep a file with this info in case I need it.
These are the things I do to keep grounded. About once I month, I have a meltdown when the responsibility of caregiving for my husband and Dad take their toll. But I'm usually back up and running in a short time. I am grateful to be able to care for my guys and am thankful for each new day when I can rejuvenate and take on the challenges of the day!
I really miss my freedom. It didn't take much for me, but it was important. He hates for me to leave him, even though he can walk some with his walker. We recently moved into a retirement community and there is so much to do here, but I feel trapped. Also I hate feeling guilty when I do want to get out for awhile. I want so much to enjoy my last years. I feel that I actually lost him years ago.
Hope I am learning what to do and not to do when I become unable. I pray my mind will stay sharp. I never want to make my son feel guilty or that he must take care of me.
I'm trying so hard to be content in whatever circumstances I find myself.
God Bless!
Like you, I just want to do my best. My mum would deteriorate quickly if moved into a home.
Keep up the good work all you carers. Wishing you all a great light at he end of the tunnel lol.
I'm so tired that I don't enjoy outside activities any more. They take more energy and brain power than I have. People say, "I don't know how you do it". Well, I don't either, except that God has to give me the strength to go on. After all, He put these people in my life to care for as they have no one else. And I do feel that my work is important for them. I know that even though it feels like a lifetime, it is only a few years. And even though there appears no light at the end of the tunnel because there are three tunnels, I still know that the day will come when I will only have memories of them. (I just pray I live long enough to bury them and not the other way around). At night, I walk through the house realizing that one day I will be here all alone; they will all be gone. What will my life be like then? Who knows. I just know that right now, for today, I have 3 sick family members who desperately count on me. ( I have now hired a couple of good caregivers to help me. And only my brother qualifies for a facility, but it is too painful for my mother to let him go. And I have sought and taken advantage of any resources there may be, "Meals on Wheels', etc.). So, I feel for and understand the extreme sacrifice each caregiver makes. But remember, all martyrs gave up their lives for another when they didn't want to. Nobody requests to be in this position. Nobody wants to clean someone else's butt, wipe their nose, brush their teeth. (I gag with the teeth) The reward for me is that I haven't given up on them. I sleep tired, in pain, frustrated, and sometimes angry. But I sleep with the knowledge that I took the best care of them that I could, (at least most days). Some days it feels like minimal care. But that is all that can be asked of one. My day will come and I can say that I did my best. We have to be kind and gentle with ourselves too.
more "face-to-face" meetings with those of us who are the 24/7 people! Much like alcoholics have AA meetings (some weekly) and also ALANON for parents, spouses, etc involved with alcoholovs.
May we volunteer in this kind of message our email addresses and telephone numbers to help get such further efforts going?
I think I need such desperate measures and hopefully, even networks of volunteers
for routine matters may crop up to help!
PaulB
Caregiving is very draining and trying to have a life of your own is difficult. I am very happy that my siblings support me even though they can not stand to be around mom for more than a few minutes without their blood pressure going way up. Ha.
So happy to read this update. You give me hope!
Thanks for commiserating. My husband is just starting to have noticeable dementia, and tonight he asked me why I put him through the wringer earlier. Lol. Yes, it’s almost funny. If it was on TV, it would be.
My husband has a terminal illness. That’s why Hospice is coming in to do an evaluation. I’ve heard that they can be very supportive, but I’m not sure exactly how they could help. We will find out. Alternatively, we can get daytime help through the VA, but the workers they send to the house do not connect well with my intellectual and very private husband.
Like you, I’m stuck with him 24/7 because of his mobility issues. But he did compromise today and say he would allow me to attend a support group. (He would have to wait for me somewhere close or in the car). I hope it works because I need interaction with other people.
I am so grateful for this on-line support group. I can't go to a local support group, because I can't leave the house unless someone is with my husband.
So, I have been in touch with 2 agencies that could come in and do some things. Tomorrow, the nurse will come to evaluate him. Today, I broke the news, in what I thought was a very appropriate way because he wasn’t feeling well. (That’s too bad, honey, but, a nurse can come tomorrow...) And then all hell broke loose. If I want a divorce, I’ve been assured, again, that it’s completely my choice. Or, if it would make my life was, easier he’d be ok to die.
Omg. Why...? Anyway, I didn’t back down. And after a few hours, we are now talking civilly again. Not sure how tomorrow will go. And I’m certainly not telling him it’s Hospice coming for the eval!!! Why is this so hard?
Some days are sweet and enjoyable but many are tiring exhausting as we repeat ourselves over and over again, unending calls, visits to urgent care for aches and pains, that have been diagnosed and dealt with before.
You try to sound so loving and calm but every so often the edge sneaks in and you see it in your persons face that they feel badly, then you feel sucky too. and OH my gawd it is exhausting.
I have found meditation, breathing deeply, humor sometimes dark humor is helpful.
Big hugs
I would talk to your local Area Agency on Aging to see what kind of help is available for your mom. She may qualify for Medicaid if she is low income and has few resources. You shouldn't have to be paying for her care out of your pocket.
It sounds like your mom is a very sweet lady and you all are very close, but sometimes you still have to set boundaries just like you would if it were one of your kids. Don't feel guilty if you can't take her every holiday or can't come stay with her 3 days a week. You have a full-time job, grandkids, and being a pastor's wife has to be pretty busy as well.
It sounds like you are getting burned out and need a break. Since your mom has round the clock care where she is, could you perhaps take a week or two off? Just to take care of you. Your needs matter and are important too, and God loves and cares about you too. Please, dear friend, don't believe the negative thoughts that suicide is the answer. If you get to feeling that down again, please pick up the phone and call someone.
And please feel free to come back here any time you need to vent and people to listen. This site has been so helpful to me, and there are amazing people here who understand exactly what you are going through.
Don't spend too much time worrying about your sister. I have 5 siblings that offer nothing not even a visit to My Mom. She lives with me 24/7. I get it. It is a difficult labor of love, and I only get through each day and each second relying on the Lord.
Please don't give up. Love with no regrets and simply do your best. But you must make sure that you remain as sane as possible in the midst of this struggle. Only by God's help have I remained as sane as possible, I have grown and see my patience growing. We all have good days and bad days. But, please understand that God can help you through this, and he does not give us more than we can bear.
I will be praying for you. My heart sincerely goes out to you, this is one of the hardest things we will ever do in life. But, God sees your efforts and your labor. He knows your struggles and He is there, if we just turn to him for help and praise him in the midst of our struggles.
She was coming back to Michigan once a year sometime in the summer, June or July in her motor home and would leave as soon as September or October. This past year she came home a few times to help me out but I heard constantly how much it cost her. Mind you she and hubby are retired and she got not one but two large inheritances from her father and grandmother over $400k. (Yes we have the same mother and fatger).I got nothing she was the oldest.
I was always the showcase child, honor roll, college, masters degree and a good job, husband. She and her husband always spent above their means to keep up with the Jones My mom had to co-sign for their cars and her kids cars. She offers to help with nothing. Dad and grama both had money so sis was able to put them in a adult foster care and assisted living. No financial struggles. Mom has little money. Parents divorced.
I work full-time at a stressful job, I'm a pastor's wife and a new grandmother. I had to move my mom out of her house of 30 years, sis never offered to come home to help. I rob Peter to pay Paul to pay for her care, meds, and Bill's. I've moved her to an apartment close to me and have around the clock care. I take off work 2-3 times a week to care for her and I spend the night 2-3 times during the week and get up in the morning go to work, come home back to her house. I stay all day Saturday and Sunday including nights. No weekend breaks until the summer because I have to save money. Then she manipulates the schedule to ensure I have her every holiday. Needless to say I am burned out, depressed and yes often think of suicide and i know my mom is not happy with her quality of life. She has dementia, needs total assistance, eating toileting bathing etc. She was always been outgoing. Everyone loves her in the building she lives in. But I get criticized by sis for what I'm feeding her, im told don't take her out apartment as there are germs. I barely have time to cook. I tried to ensure she had a balanced meal. But it wasnt healthy enough. Dr. Told me to give her whatever she will eat. Ice cream. Sundaes etc. If she won't eat anything else. As she is losing weight.
I really feel like whoa is me, I have no life and nobody cares. People wonder why I keep things to myself? Because I dont have the energy nor do I feel like hearing excuses as to why someone cant do something. Even when I'm sick I keep going cause I'm all mom has. I just feel like nobody cares.
I cant move mom in with me because I have stairs and full bathroom upstairs she is in a wheelchair. Now if ms. Inheritance would pay for an addition I would be glad to move her in. Just needed to get this off my chest.