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
We keep someone here at all times to watch over my DH while I get to go riding, hiking, and doing some pre dawn photography!
My Gang also, weeds my garden, mows yard, fixes fences, and helps out with any chores that need doing.
Then we stay up late at night and watch the stars and enjoy life.
I look forward to seeing them and their crazy fun kids and dog. It even distracts my DH for a bit as the father of the gang will sit and talk welding, tractors, and fun stuff with my husband. My hubby may not visit long but he will be included as much as possible.
The nicest part about this? I don't have to explain a thing to my Gang. They already know how to handle our situation.
Have a great weekend, if you can. This is what I've needed for a while!
He wants to be independent and doesn't know his memory is not there.
My MIL is like that too. She doesn't understand the fuss over her memory issues as she doesn't see that she has any.
I hope you can find time for yourself.
Take care.
You might to try it. It has helped us a lot.
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.
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.
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.
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
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?
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.
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.
So happy to read this update. You give me hope!
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.
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
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.
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.