I need to share that I am feeling worn down because of the lack of support "out there". When I need support, I feel that what I get are comments or suggestions from the Peanut Gallery about what I could/should be doing for my elderly father. This is depressing and not helpful to me. It is so easy for others looking in to see what more could be done for Dad, but I am the one who has to make it happen. People don't mean to be "not helpful" this way....they just don't understand. The fact that my father is in a care facility can add to the pressure on me because people think that this must be so easy for me. I am an only child and am responsible for making sure Dad is happy, and I try to the best of my ability to do that. But after years of helping Mom and Dad ( with two moves, then helping while Mom was dying, and now overseeing Dad's care) I am really feeling it.....I feel depleted. I don't want to burden friends with talking about this stuff. Talking about dementia and caregiver fatigue is not something people want to hear about, and I don't blame them. I've been trying to tough it out alone, but decided today I need to talk in this online group. My father has dementia/psychiatric issues and this is what makes it difficult to keep him satisfied and happy. No one knows what goes on "behind closed doors"....the angst my husband and I have experienced in working to make various things happen for my Dad, all in an effort to keep him happy. I will see this through until the end....I will not fail my Dad because I love him with all my heart. But I have to admit, my energy reserves are very very low. Thank you in advance for your support. I know you get it.
Today is the viewing for mom as I gather my thoughts quietly this morning and reflect back only joy feels my heart. I am bothered though with what my siblings are going to do at the funeral home.Since mom passed I spoke with my brother about 20 mins and he relayed info to my sister. Neither one of them could swallow their pride and resentment enough to show at funeral home for arrangments. So I did it alone, but hey I did everything for mom alone. They washed their hands of mom 2years ago, the best thing I can say about that is the heading of your post: "I need support, not criticism nor judgment". I have adopted that as my current motto. When comments are made I will keep those words in mind. I pray those words will give me the strength to look the other way and only acknowledge the support.
To all HAPPY NEW YEAR, MAY GOD BLESS YOU AND GIVE YOU THE STRENGTH TO TAKE EACH DAY FOR WHAT IT IS! MANY PRAYERS TO ALL MY FRIENDS HERE!!!
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Christina, your suggestions of the little things really resonates with me. As my Dad recedes further into dementia, I am noticing that what you say is so true. it really doesn't take anything grand to make him happy. He and I have a favorite activity where I pull up a chair and look through his cards with him....he saves all his correspondence to show me. You mentioned the See's candy....My Dad likes that too! (we get him the sugar-less kind), And then the "extra kiss" you mentioned...what a beautiful, tender idea.
There is something I am noticing that is happening which I never knew could or would happen.....For three years, since Mom's death, I have been caring for Dad, and his dementia has steadily gotten worse. It is getting harder and harder to "get through" to him and to exchange love....at least it FEELS like it's harder to exchange love. But lo and behold, just recently I am aware of the fact that my relationship with my father has actually grown and deepened, even as there seems to be so little "real" relating going on. When I think back on the times when I'd leave his room and sit in the stairwell and cry, thinking " He is suffering from dementia and cannot experience the emotion and joy he once could, and is more prone to loneliness and depression.....Why?"..... But then, as caregivers, we can look back and see that over time our relationship with our loved one has been as important as ever. And that love HAS been exchanged, even though we can't always see it.
Hugs, Christina xo
Like you and Christina, I mailed very few cards this year, mostly just ones to my mom's distant friends that didn't know my dad had passed away. With the internet and e-mail I keep in touch with the friends that matter. Christina, you are right about relationships and appreciating the small things in life. Those are the things that make up the big picture.
I hear you Anne about pushing through doing extra things at Christmas. Our son is 15 and I wanted to make things 'normal' this year. Sure took the wind out of my sails but I'm glad I did it. The three inches of pine tree needles are now gone thanks to my husband's help. There's a lot of empty, dusty shelves where the Christmas stuff was, but uffda, I'm going to put my feet up and figure that out in the new year. Shelves, Schmelves, this woman is taking it easy this evening.
Warm and kind thoughts to everyone as we begin 2012.
Guess what? I skipped cards this year, too. Time and honest discussion is what is important with all relationships. If it isn't with certain people, then maybe that relationship is just for a season. We gravitate to the people who share our values.
I know that finally, in my Mother's quintessential life, she appreciates the simple things: a hug, a piece of See's candy, a walk outside in her wheelchair, with a stop to make sure she is covered, her feet are on the footrests, and an extra kiss; following up with a good drink of water, and some music playing in her room, a peeled and sliced apple to share.
There is so much unnecessary stuff that we worry about. When it comes down to what's important, it is quite simple. Cheers, and Happy New Year, Dear One:)
The guilt issue is an important one for us to address. In my case at least, it can creep up on me.....I think I will have it corralled away, and then it appears again....and I notice that I am feeling guilty that I didn't do such-and-such for my father. The fact of the matter is that he would love it if I would call and visit him every single day, and bring him all kinds of "goodies". But I noticed that he gets used to that fast, and then I start feeling exhausted.....so I cut back on calls and visits to a reasonable level where I can manage. But the holidays placed a lot of extra tasks upon me, and upon you and others, and that is what pushed me to edge over the last two weeks. Wrapping presents, planning and cooking holiday meals.......I did skip cards this year.......but there were some things I just pushed myself to do and make happen. The New Year's Party last night was fantastic and I had a wonderful time! felt good to take time to nurture myself.....thanks for all of your advice.
She went to rehab and I was hitting the wall 2nd brother just died and my daughter made me promise to leaver her there 6 months to gain her strength back and give me R&R. Well it was no walk in the park. If I didn't go everyday I felt guilty. When I was there I was anxious because she kept wanting to know when she could come home. She has been back now for several years and slowly going down. Everyone wonders why I don't put her in NH. That would break her heart and it would not relieve me anyway. So even us that do have them still home understand....the caregiving, stress, guilt, etc doesn't go away just because they are not at your home 24/7. I'd rather have her here where I won't worry about what is going on...even tho' it is taking a toll on me.
And lack of support is probably the hardest thing I deal with. No one wants to hear about it...and I feel such a sense of lonliness - even in a crowded room.
Now that she is in an ALF 200 miles from all of her friends, she receives no visitors at all besides my little family. She still swears she could have made it work staying in her own home had she known 'I would do this to her.'
But you're right now that I think about it and write it all down. I didn't 'do' this to her. It's not my fault my dad died and she has severe osteoporosis and broke her knee three times. None of those things were or are in my control.
I did the best I could for her considering the circumstances. Now I need to do what is best for me. After a year of tremendous stress, I'm just tired of the fight of dealing with her grasp on me. We're finally getting snow here and I'm going to use that as my opportunity to lessen the frequency of my visits. She was always terrified of driving in the snow, despite growing up in the northern plains. The roads might have to be icy a little more often. I know, I know, it's game-playing but whatever works, works. I learned from the master (sigh).
That approach doesn't remove the issue of guilt, however. I'm realizing that I need counseling to address that fire breathing dragon. No one ever expects at the age of 50, or however old, to be dealing with mommy issues. Just writing that makes me cringe. I guess I should parse it in relationship terms.
Thanks so much for your advice and wonderful words. I feel a sense of relief and such support from all of you special and understanding people here.
Happy New Year to each and every one of you!
Love,
Windy
Having a parent in an ALF in no way diminishes our involvement in their care. In fact, I feel no less stressed because I still have the majority of caregiving responsibility even though the sib lives nearby. And I agree, it is an act of kindness to give your parent a nice environment to live in with far more social contact and health care assistance. In that way, the ALF does a much better job than I could; trying to race around finding in-home help to supplement my care was exhausting. As ladeeda wrote, "it is a solid act of love." Well put....
Windy: your Mom chose a facility that accomodated her need to smoke...but, does not accomodate your needs.
If I may chime in: stop making meals for your Mom now. You are paying dearly for ALL services at the ALF.Your Mom will get used to the food. Bring her special meals for b-days, holidays, etc. Make one trip a week and stay in touch by phone with her and the staff, if needed. Buy a box of dryer softener sheets and hand them to the laundry staff. (there is no reason why the laundry should be scratchy for any resident) If she complains, tell her that the trips are taking their toll on you and you need to keep it to one time a week and that will be "her day" to attend to all of her needs. Tell her to make a list of shopping needs and you will do it on that day. That gives her focus and you a break from being a "gopher." You are NOT the unpaid help...but the only way to make it stop is to draw boundaries.
Are you feeling guilty that Mom is in an ALF and trying to "make it up" for it by running yourself ragged? If so, your Mom has caught on and will take full advantage of it.
This is a new year. Give yourself a BIG break....you have the permission of everyone here. Your Mom is in a lovely place. Now relax and get back to your live.
Hugs to all of us who have BTDT....Lilli
You have and still are doing a fantastic job, just don't forget to make YOU happy too..... It takes a lot of courage to place a loved one... it doesn't mean you don't love them, in fact it is a solid act of love.... there reaches a point that we can no longer do the best for them.... so just know you are not alone... lots of love and support on this sight...
Have a good time at the party tonight and be safe... hope we hear from you again.... thank you for sharing...it helps us to not feel alone too....
I have been reading here, not writing, because my mom is in AL and things are supposed to be easy now. After having cared for my mom at home, I know what it's like and I don't want to sound ungrateful to those who are still in the thick of the home day to day struggle.
AL is not a magic wand, that's for sure. I visit my mom and bring her lunch every other day. It's a 40 mile round trip as she wanted a facility that had an indoor smoking lounge (Minnesota) and it was the only one I could find. It's a gorgeous place full of really nice people along with a hefty price tag. My dad worked all his life to provide for her and I chose this place knowing he would want her to have the best. My husband and I are very middle class but I don't care if I don't see a dime of inheritance. I just want to know that she is well cared for. Sometimes I lie awake at night worrying that she will outlive their nest egg. It doesn't pay to borrow trouble though and I know God will see us through whatever comes in the days ahead.
Back to AL not being a magic bullet, my mom hates their food, so I still provide home cooked meals for all of her dinners which the CNA's heat up in the microwave. I bring her laundry home and do it here as their hot water wash and detergent makes things stiff and scratchy. (I do understand their need for that to sanitize things.) The list of shopping never ends. I try to anticipate her needs but there's always that one extra thing that has me shopping almost daily. Not to mention managing the finances, taxes, etc. Placing a loved one does not put one 'off the hook' by any means.
It is stressful in itself and your words helped me to recognize that as well as writing what I just wrote. I've felt like a spoiled brat feeling wiped out and stressed. After all! Your mom's in assisted living. What's your problem???
Thank you for helping me sort out my feelings. Guess I'm not just imagining things.
"Need support, not criticism or judgment" should be the caregivers motto. There are very few places, outside of forums like these, where you will receive true empathy and sound advice. I have not found much compassion from family, and friends scatter...lost a few over the last 4 years. (but, then again, I have made new friends too who do not shy away from this phase in my life.)
It is so easy to say, just shrug it off, but when your spirit is depleted and your body is exhausted it is hard to muster the energy to explain or tell the "arm chair quarterbacks" to take a royal hike. Add to that the guilt derived from stereotypical notion that only women should take on the caregiving role and do it without "complaining," and you have a recipe for disaster.
What you are experiencing is something we all go through at some time. I call it "hitting the wall." Mine happened this summer. Your body, mind, and soul are screaming at you to stop and regroup. You cannot ignore these signs because they will REALLY try to get your attention by making you ill.
Try not to "do it all." If you Dad is in a nice facility, let the professionals do their job and you can do the daughter job. If there are days that you cannot handle a visit or conversation, don't do it. Think about quality rather than quantity time. Attend to your Dad's needs first - his wants can come at your convenience.
Overburdening yourself will accomplish nothing. Your Dad needs a healthy daughter to help him.
Lilli
Yes, sometimes we have to disregard how we "feel", and just do the right or healthy thing. Once you get involved in something you didn't think you wanted to do, you catch onto the energy. Surround yourself with loving and positive people.
Don't talk to them about your Dad or the drudgery--just talk to US about that!!! OK?
Have a great time!! Talk to you soon! Hugs, Christina xo
It is no wonder you "have depression". It is most likely circumstantial, and you've got the circumstances.
I had my Mother with me for a year out of 3, and now she is in a residential care home, again. It is still time almost everyday that you have to carve out of "your life", so there is nothing easy about it. The constant focus and underlying strain does catch up with you, and there is no escaping it, unless someone else can take over. That is not realistic. At least you do NOT have to contend with siblings, as that is an aspect that can be very demoralizing for many here, as well.
You must separate yourself from the emotional situation. Pretend, focus on other interests, and remain as detached as you can--Fake it until you make it. It sounds like you may have been a victim of abuse along the way, considering your Dad's mental illness. It is what it is, and you are in a tough place.
I encourage you to come over to the "Grossed Out? Need to Vent"? thread, which you can find if you look over to your right under "Recent Community Activity".
there you will find sisters who will love and support you and one crazy guy who tells us jokes and stories every night. A faithful and fun bunch of wonderful Angels.
I think it's what the doctor ordered for you. Jamie, you, too, Sweetheart.
All we can do is be there for each other and work it out. when you KNOW you belong to a special group, it does wonders for your self-esteem, confidence, and your own mental health. As our Captain Bobbie says,"Vent and Live."
Hope to see you ASAP!!!!! BIG HUGS, Christina xoxo
You sound like a wonderful person to be there for both parents. When things get hectic, just try to step away if even for a moment and take a deep breathe. It has worked for me so many times. I can't promise you that things will get easier but finding a way to cope will get you thru the craziness.