I see from the notice that I haven't posted anything since July. I now have my husband going to a Day Center three afternoons a week and I have joined a support group so I feel I have made some progress. But....I find myself becoming totally worn out by the end of a full day that I have spent with him. His repetitions of the same 6 sentences, all ending with a question that require an answer are driving me insane.
"We have so much to be grateful for ...don't we?"
"You know how much I love you don't you?"
"Don't we have a lovely home?"
"Don't you just love our yard?"
"Isn't it a beautiful day?"
"Isn't it great that we don't have to worry about nickels and dimes?"
You will notice that they are all very positive and loving and for that I am very grateful. But even positive comments that are repeated over and over and over make me want to scream. The sad thing and what I am so ashamed about, is that on occasion I do!
Saturday the knob on the dead bolt on our front door came off in my hand which rendered the front door unlockable. I immediately called our handyman to call me Monday for this "semi emergency". I told my husband about it, showed him where it had broken and told him what I had done about it. The piece was lying on the kitchen counter. I wish I had kept count of the number of times he asked me what it was. Then, that evening he went to the door to make certain it was locked for the night and came back and asked me what happened to the door? He tends to check on the door mutliple times each evening and I have stopped telling him he has done it already....makes no difference really. But, because the knob was gone he came out each time and asked me what happened to the door!
After the 5th time I lost it...totally....I screamed "ITS BROKEN!!!!!" right to his face. I was mortified at my behavior and hardly slept a wink that night just going over what happened to me, what a witch I have become!
Of course, the one great thing about dementia is that 3 minutes later he doesn't remember that I screamed but it leaves me totally drained, and yes, I am taking an anti depressant.
I am by nature a positive and gentle person but this is a test I don't know that I will pass.
I have been advised that caregiver fatigue is one of the reasons loved ones are placed in memory care units. But my husband still retains the adult living skills needed to be at home and knows me and his family so I don't feel we are ready for that next step. I have visited two of the memory units here in town, even put my name on a list for one but I just can't see that happening for us yet.
I find myself not wanting to put up Christmas decorations, don't have it in me to write cards...what would I say? My church has a "Blue Christmas" service on the 20th and I am going to attend. Maybe its the season that is getting me down.
In addition my father just had his 98th birthday and I worry about him and my 90 year old mother who is his caregiver in their home. He has his mind thankfully.
I just felt I needed to post again and see if any of you have any ideas or "keep my chin up" advice.
Last edited by btgia; 12-06-2010 at 06:47 AM.
Reason: left out a word
The following 2 users give hugs of support to: btgia annben1 (01-15-2011), DDD Sara (12-09-2010)
Bonnie, breath dear You said it yourself... 3 minutes later hubby doesn't remember that you screamed at him so why are you beating yourself up so. By the time you heard that last question "What happened?" you were exhausted, frustrated, and every nerve in your body was frayed. You snapped for a minute. Just proof that you are human.... not super woman. You can't be everything to him at all time without letting off a little steam once in a while. I have done the same thing... more than once. What you need to do after it happens is to forgive yourself, understand that you are no super woman, and put your colorful spandex away. I left my superwoman cape in the closet long ago. I actually gave myself permission to be frustrated and angry... I just try to do it at other times and not in front of Mom or Dad. Hopefully you have a support group buddy. If your groups doesn't have buddies you might want to suggest it. A support buddy is somebody you can call in the moment just to say.... hey I need you to hold my hand in this moment before I throw something.
The next time something happens don't try to explain it to hubby. He is not going to remember or understand. Hide the evidence if possible. Make things appear as normal as possible so he will stay in the loving beautiful day mode. To hear that 100 times is annoying enough but at least it's a positive statement. Bury the door knob in the drawer or stick it back in the hole so that it appears ok. Hearing about a situation that is stressful to you already if far worse than hearing the I love you Just know that anything out of the ordinary you are going to have to listen to 1000 times... so make it appear normal.
When I was struggling with "when it is time to place Mom and Dad", one of the wonderful members here told me that a loved one is placed when we the caregiver is ready. By that time the loved one is past ready for placement. We tend to wait. We tend to think we can do this one more day. We tend to want them to be a little better than they are. Then we hit a wall that throws us into a panic. Therefore it is good that you have his name on a waiting list. When you are ready... he will be past ready
It is good that you have the daycare and the support group. Is it possible for you to have daycare 4 or 5 days a week? You do need some major down time. Perhaps even a respite care for a week? One thing you might want to think about is weaning him from your constant presence. You are his stability at this point. He is going to cling to you. If you can gradually withdraw a little more with time it will be better for you. Letting him know that you will be gone but come back is an important lesson that takes time and patience.
You are doing well. You have come a long way even if there is still a long journey ahead of you. Give yourself credit for all you have done and be kind to yourself by forgiving yourself for the small outburst that he doesn't even remember.
The following user gives a hug of support to Gabriel: btgia (12-06-2010)
The Following User Says Thank You to Gabriel For This Useful Post: btgia (12-06-2010)
You are an angel Deb. Thank you for your kind words. Your passing on the wisdom from others about when he is ready was reassuring to me. I guess I feel that as long as he knows me I need to keep him with me. I will consider daily day care. Right now its just 3 afternoons a week beginning with lunch. Mornings are difficult to maneuver. He is slow to wake up and get ready. I excercise those three mornings and keep my fingers crossed that he is in the shower when I get home. This morning he wasn't....didn't read the notes I left. Boy did we rush around! (read that as me)
Bonnie... Dad never lost "knowing me". His was vascular and it is different from ALZ but he never did lose my name connected to my face. He was in a facility the last three years because he needed assistance with so many of his daily needs, wandered, and had delusions. He adjusted well to his "new home". I did make sure I took his chair, his favorite pictures, his books, the comforts of home. As long as he was surrounded by the familiar, including me and Mom, he was ok. Just recently has Mom lost the ability to recognize me. She had been in a care facility for 3.5 year. Even in her combativeness, hysteria, wandering, incontinence, and inability to care for herself... she still connected me and my face. So you might want to rethink that measure of his need to stay at home... or your ability to keep him at home.
Right now you have 12 hours a week that you don't have to worry about him? That's not much time to renew your energy. I do understand how slow mornings can be. Getting them up and ready for the day is a chore... and they don't always want to get up and cooperate. Please do consider 5 afternoons a week if you are only going to do afternoons. At least you know you have 20 hours a week to renew.
Another possibility could be to have in home care that can help him in the morning or stay with him while you are busy with your other activities. You absolutely need to keep your life in tact. Getting him used to having others help care for him will be helpful in the long run. It may work out well enough that he can stay home a lot longer.
Respite is a good way to test the waters of placement. Recently there was a nice lady that was placed in Mom's facility for just a week. The caregiver was exhausted and needed the respite herself. The lady enjoyed the activities and socialization. She walked around singing when she was not engaged with others.... so she is now a permanent resident. It took that week for the caregiver to realize that her Mom needed to the socialization and activities she received in the care facility. They are both better for the move
Just hang in there, do the prep work for when you do need placement, and you will know when the time comes. Until then get as much rest and balance in your life as possible!!
Interesting, my husband also has been diagnosed with vascular dementia. He has diabetes and had several small strokes (TIAs) So maybe he will always know me. I have looked into respite care and it is very difficult to find here in Des Moines. The facilities don't want to keep those rooms empty. So far, when I've taken a day trip or a weekend with the "girls" (done that once) his daughter has come and stayed with him. She suffers from depression and isn't always the most reliable but is willing to come when she feels up to it. So I do have that avenue.
Bonnie, Dad also had Vascular Dementia. It just all depends on the part of the brain that is affected
The facility Mom is in does not usually have respite care. They don't leave rooms open for that purpose. But if there is an empty room... they will accept a respite for a week or two. Yes, it is a form of marketing. Vacant room, potential resident, together equals a good deal for both. Many times the respite resident goes back home, sometimes they stay, and sometimes they go home and come back later because it is a facility they are familiar with. It's a hit and miss... but you can always ask if there is such a possibility in a facility that doesn't normally have respite care. It's actually a win win for everybody.
If you find the right person in home care is wonderful as well. We had an angel with mom and Dad for a year. She was amazing. She cooked, cleaned, took care of them both, handled their medications, took them to the doctor if necessary, packed them up and took them to the senior center, or just stayed home with them and entertained them. She would even stop in the morning, pick up Dad's paper, groceries, and maybe even a special breakfast biscuit for them. yep, she was definitely owner of some massive wings. It enabled mom and Dad to stay at home another year
I am just glad you are feeling a little better now. Keep it that way. Just know you are human, doing the very best you can, and any slip is forgivable if you will only forgive yourself!
My husband is at the day facility this afternoon and I am getting all kinds of little stuff done. It is so wonderful to must have some quiet time. I realize that he talks all the time..all loving and gentle statements but constant. Silence is truly golden this afternoon. We're going out tonight to see the musical Mary Poppins. I think he'll enjoy it. He loved South Pacific when it came.
I'll be in touch again..your words are calming. Bonnie
Bonnie can I recommend ear plugs? My Dad was a talker. We were all beautiful and he loved everything for such a long time!! When I was there for days on end, I would walk around with my Ipod playing sweet music in my ears just for a change. I would see his mouth move and just nod or say uh huh.
I am so glad you are enjoying your time to yourself. It is important to balance your life between him and yourself!
Ha! I wear them at night but I never thought about daytime...I'll give it a try. He just always demands an answer and if I just nod or grunt yes he says I don't sound very enthusiastic! I can't seem to win. I bury myself in the paper or a book or my email and he still follows me around and "visits" about everything being beautiful. I've been reminded that at least he isn't yelling at me and I realize it could be so much worse but still......
then you need to put on a big smile and just say yes with enthusiasm while listening to the music! Laugh occasionally or look serious. I can tell by the look on Mom's face what response she wants back. Most times a smile and a giggle works. Good or bad she thinks I am agreeing with what she says.
Yes, you are lucky that he is in that beautiful loving place. Even though it can grate after you hear it 100 times it is at least nice to hear the positive rather than the negative Just keep that in mind as you listen to your favorite piece of music playing in the background Welcome to groundhog day!
You are doing well Bonnie Hang in there and know you are as beautiful as he says!