My dad is in memory care with dementia. The place is well-staffed and well-organized and they really try hard to find ways to keep my father engaged and happy. He hates it. He calls it an institution. I used to spend more time with him and see him four or more times a week. Now that he just complains to me, I spend less and less time with him, just seeing him once on the weekend. I have no energy for him after a long day of work, even calling him has become impossible. This year has been one crisis after another for him. Up until May he was fine and lived completely independently. He was still balancing his checkbook and doing the math in his head. Now he doesn't even remember where he was born. Many things happened to him, I won't go into it. I have tried to do all the right things but he kept getting worse, and his unhappiness is the worst part. I no longer have any sense of self and am have become deeply depressed. He is just going to keep getting worse, and at some point run out of money and have to be in a place that isn't so nice. I feel like I am being sucked down with him and by my feelings of failure. I have two siblings who don't help. At this point it feels like, it's me or him. If I don't stop seeing him and try to have my own life, I'm going to end up in a psych ward. I am not exaggerating. The thing that makes it harder is that once in a blue moon, he'll act more like his old self and joke around and crack me up. The man can be very funny. And when that happens, I know how deeply I will be broken hearted when he is gone, and how I wish I could be with him.
Welcome Burnie.
You kinda' can't quit but you can limit the amount of exposure you have.
My mother and I never got along very well but it's been real hard watching her go through the stages of Alzheimer's. She doesn't even know who I am anymore. She has chronic headaches and she tells me about them at least every 30 seconds. There is no cure. I'm ready to loose my mind. We visit until I can't take it anymore. That's the visit, "I have a splitting headache." Dear God, even though she's in stage 6-7, isn't there anything else we can talk about? I feel at times like I'm loosing my mind too. (I'm past menopause, so that can't be it!)
I'm considering going back to the city I used to live in Mexico for a few days just to "hide". I have other family problems also and I can't remember when I've been this depressed. I can't take anti-depressants because they mess with my heart. It's hard to be a faithful Christian when you feel like your life is crumbling around you. I just wish I could make all this go away. I completely sympathize with you. Sometimes you just want to cry.
I thought this time in my life would be easier (I'm 60). I thought all my problems would be solved and I'd just "coast" until I retire. The next 5 years seems like an eternity. I don't want to watch my mother turn into a vegetable and have to go through the other family difficulties too. Where do we go to give up?
We get together here and draw strength from each other. No one else understands.
Do what you need to do for self preservation. Don't feel guilty. You miss the dad you HAD, not the person he is now. You're in mourning, as I am. But you have to take care of yourself to keep your sanity. Hang in there. Keep posting. Do something good for yourself. You won't loose your mind, it just feels like it. :)
Because I can.
Tomorrow is another day.
Welcome cuz.
I could be in Puerto Rico living w/o power for an indefinite period of time, in literally primitive conditions. Worse, I could be a Sandy survivor, still living in primitive conditions years after the hurricane.
I could be one of the people who become lost in the wilderness and literally freeze to death b/c of exposure and lack of proper clothing or gear.
Then I realize that I only have to deal with human conditions, not catastrophic weather conditions that no one can control.
And sometimes I read Chicken Soup books, for people facing challenges. So many of those people face dire situations far more serious than I do.
I think one of the hardest parts of caregiving though is the lack of good choices, or sometimes just the plain old lack of choices, period.
You could give up and just throw in the towel or you can just take it a moment at a time. I find if you imagine a whole lifetime of something it seems unbearable but if you live your life in increments it's so much easier. You can handle anything for another 5 minutes, right? Noone knows how the future will go. My Mom's death was unexpected. I thought she would have lived much longer. I'd give anything to have to worry about her again.
So, live day to day, not as if this is going to continue forever.
I'm doing this on my own. Beside the non-helpful siblings, I don't have a spouse. My ex left three years ago. I have a lot of grief about that but he cares about my father and helps out occasionally, more than my siblings for sure. But otherwise I'm living alone, I work full time and that's all there is. It's been a long haul of things in my life getting worse for a while now, but really the last six months have been really one thing after another mostly around my father. Every time I tell people the next awful thing that has happened that can't believe it, they say, wow, you really don't get a break.
You're right, SueC1957, I miss who my father used to be, who I catch a glimpse of once in a while. The truth is, he was not a great father for most of my life, but I moved on from that and somehow we became friends about ten years ago. I miss that person who was my friend, who was interested in my life (when I had one).
You're right, GardenArtist, there are no good choices.
And talkey, you have a point, that I may be triggering the complaints. All I hear from people at the facility is how well he is doing and they can't all be lying.
Thank you, everyone, for not judging me and giving me permission to get myself back. I swear I don't even know who I am anymore, I just have a vague memory of the someone I used to be.
I wish you all relief from the pain and moments of grace.
When I go upstairs to my "studio", with all the fabric, yarn, patterns, clothes I've made since I began sewing at 13, I see the foundation for my "old self", and it does help balance the existing situation, which isn't going to be forever unless I die first.
But sometimes just "escaping" to my studio as I call it, helps me remember that at one time I had none of that, created it, and it's still there for me when I can get back to it.
I used to love the JAG programs; I thought they were just so uniquely and realistically representative of military people who deal with the same problems we do but even more b/c of their professions. In one episode, one of the officers comments that he's "so far from what he used to be he hardly recognizes himself." That's not the specific quote, but the jist of it.
It was a good reminder, and insight, into the fact that we caregivers aren't the only ones whose lives take unexpected turns. It helps me keep perspective and remember that mid-course corrections are frequently possible.
Burnie, try spending a little more time on yourself, gradually, even if it's just 5 minutes, then 10 minutes. Retreat and relax. If you have a whole day, as I sometimes take, it's literally a miracle regenerator and you can return to the caregiving with more emotional and mental strength.
This probably sounds simplistic, or those who have more challenges to face than I could easily think, "well, she's doesn't take care of two parents with dementia", or something like that. And that's true, nor do I know if I could handle it if faced with it.
But from my situation, I'm trying to start little and work out respite and restoration, and for me, it's a lifesaver, and I hope that my experience will help others facing caregiving burnout.
I recall that when I was rushing to the AL to visit my LO everyday and sometimes TWICE a day, when there were issues or she called, I stopped to realize that as soon as I walked out the door, she had no idea if I had been there that day, the day before or the week before. I was running myself ragged, for some idea in my mind. I had to revisit what she really needed and how I could manage that within my abilities. I questioned what was reasonable.
It's great that you are reaching out for support from others. So many family members don't have much from their own families. I would not forget to have pride in what you do for your dad and be at peace with it. Rarely are people who have dementia as happy as we would like. And complaints are common, regardless of their situation.
Believe me, I know a lot of people have it way worse than me and I don't know how they do it. I really don't.
@GardenArtist, I have little room I call my studio too. I'm an artist. I've only done one small painting this year, as opposed to the ten or so I used to do. I think you've got a good idea, I should just sit in my studio even if I can't be creative, even if it's just for five minutes.
I have a lot of feelings of futility in the face of my father's situation. What's the point of a life if in the end you can't remember it, all your friends are dead or also have dementia, and most of your children ignore you? It's hard to feel creative in the shadow of these thoughts.
From the exchanges here, I realize that I really need to get some professional help. One can't live with only negative thoughts and hopelessness.
Thanks again, all you kind people.
Do you paint in oils?
It is clear you are doing everything you can for your dad, but it is so hard. I know its hard for your dad after being independent so long being in nursing home. My grandmother lived at home till 90 before she moved into a nursing. She was not happy about it but after a year she seemed to adjust. My main concern about these facilities is how much medications are given to the seniors. I feel like so many seniors are over medicated and this affects their personalities and quality of care. Because your dad is so negative, I wonder if its worth talking to the nurse or doctor about his meds and see if changes could be made there.
Even though I have siblings I too have always been my parents main caregivers. I had a lot of anger and resentment about this and I don't blame you for wanting to give up. The last few months before my dad passed, I was so angry, I wanted to give up. I do regret feeling this way but I was so burned out. I hope you can find a better balance and remember you matter too. Thinking of you.
Yes there is a decline...there will continue to be a decline.
It is very tough to continue to see this man that is on the outside your Dad but is no longer the Dad that you knew.
You need to do what is right for you.
If all you can handle is a 1 time a week visit then that is what you do.
Can you begin to apply for medicaid now? Many places will "find" a medicaid bed if a person has been "private pay" for a few years. so maybe he will not have to move. Talk to an Elder Care Attorney and see what might be available.
Is your Dad a Vet? If so the VA might have some help available. It could be anything from determining if any of his medical conditions are a result of a "service related injury" to Aid and Attendance.
I'm glad you posted because your feelings are real. It IS him or you. A psych ward is NOT an exaggeration. Caregivers can end up being more ill than the people they care for. I think because sometimes the decline happens slowly or because it's mental illness...definitely because it's our loved one and our instinct is to help that we think we can do it. But if it was any other disease, we'd call in the medical professionals and experts.
My MIL has a retirement income and we are waiting for VA benefits to come through. Through a series of connections we were able to move her into a memory care facility that was willing to work with us and her current income. She had been with us for about 7 months and we were looking at another 6 months before we could move her. It was a godsend!
In the beginning we wanted her to live with us but we couldn't foresee the reality of what that meant. Just simply not being able to rest in your own home, EVER! No peace, no quiet, no life. We learned all we could about the disease. We helped her gain weight but we aren't skilled caregivers. I only worked part time but I was exhausted. It affected our marriage. I feel that I aged 10 years in 7 months. The disease contradicts everything we know about life, relationships and communication. It is truly devastating and baffling.
I began to not want to see her, hear her, hear her door open, hear her feet shuffling, smell her. I had nothing! Did this mean I didn't care for her? Of course not.
She's been in the memory care facility for about 3 weeks and adjusting well. I'm still exhausted but recovering. I'm not sure I'll ever be the same.
My advice to myself and to you is to do ONLY what you can and no more. No guilt.
He likes to be active and outside so being confined to a wheelchair and not being able to go out when he pleases really upsets him. Well, I'd feel the same. But I can't fix it, or make him happy. I have to, as you said @marykathleen, put the oxygen mask on first. When he sees me all he talks about is my moving him somewhere else. There's part of me that wishes I could take him home with me but I know it can't be.
I think it's professional help time for me. Husband cares and comes around and helps with chores for mom especially, but ultimately he runs out of things to say - there are few good options. Trying to take it a day at a time. (SO) thankful for you all. 💗
I just want to say to everyone, if there is any way you can have a little vacation, even just for a few days, DO IT! I feel like a new person after just four days of being completely un reachable. I'm in much better shape to deal with the situation. I can't recommend it enough.