I am back home. I tucked Mom and Dad into bed tonight and made the drive back home. It is obvious that Dad is much worse than he was when I was last there. He is very unsteady on his feet with obvious weakness and tires easily. I did noticed some atrophy of his left leg when I helped him to bed tonight.... the left is much smaller than the right. That is the weaker of the two legs. I am sure that is a result of the worsening PAD. He was assessed for a walker Friday and should receive it on Monday. PT will be working with him to help him get acustom to using it. He looked at me this afternoon, after stumbling in the bathroom, and said.... "I just can't get my brain and my legs to work together anymore." He had difficulty walking to the dining room, even with help, and was exhausted when he returned to his room.
I also noticed that he has lost part of his speech. He is losing words which has never been a problem for him before. He ask me when the other goat was coming. It took a while for me to realized... goat meant kid.... he wanted to know when my sisters were coming. He has also lost the ability to read accurately. Up until three weeks ago he would read every street sign and newspaper artical aloud. He tried to read me a paragraph this afternoon and missed probably 50% of the words. His comprehension is not there either. Before he would comprehend and forget.... now he is clueless to start with. Even when watching the big rivalry football games today he only had two fleeting moments he had any comprehension of what he was seeing. He has watched this particular football game since the late 1930's.
He is also eating much less. Perhaps 40% (or more) less than before. The man who's full button was broken didn't finish a meal while I was there. At one point today I noticed him leaning over the arm of the chair. I could not figure out what he was doing until he started to sip cranberry juice out of the glass still sitting on the end table. I reminded him he could pick it up... he looked at me strangely but later picked it up.
He is also forgetting his glasses and hearing aids which he has never done before. He told me he needed to throw away those glasses because they are not doing any good.... and his hearing is worse. He reminded me of little deb's Dad sitting on the toilet today. He's having episodes of incontinence and other times straining unnecessarily.
Mom is terrified. She has enough awareness to know Dad is worse and it scares her. Most of the time she sits in the room with him. Then she will get up and scamper out of the room with no explination. She is pushing the staff to do something. She did have a mini melt down between the football game and supper. I think the realization that she was not there was difficult for her. They always attended that game with Dad's sister. I let her have her cry, while keeping Dad occupied so he didn't get upset. When supper time came I got her a sweater and said let's go. Dad and I walked out into the hall and she followed. By the time supper was served she was better.
They were both in bed by 7:30 last night. I am not sure when Mom woke up but she called my sister's, where I was staying, confused about the time at 9 am. I went over and Dad was still in bed. He slept until noon. He dressed and I fed him lunch and he went back to sleep for over an hour. He took several other naps and was back in bed at 7:30 tonight. That is more than he usually sleeps.....
So yes, something happened last week. Whether it is the AFib or some other vascular event.... he is definitely worse. It is just so hard to see him slide so fast.....
Deb...I know it's such a challenge when the reality sinks in...and it sounds like you know and have accepted what you cannot change. I'm so sorry.
I remember watching my Mom start to exhibit actions that bewildered me. I watched her when a peeled banana was put down on the table in front of her...her picking it up and not having a clue how to eat it. Now, I understand why she held it carefully and ate it like an ear of corn...the SHAPE was the same! Such a strange thing the brain is...and there are so many other things I could describe of similiar behaviors.......but it is just SO difficult to see our loved ones confused. We so want them back!
I'm glad you took some time to spend with both parents...you needed that........and so did they!............Pam
(I also have Atrial Fib...It appeared a few years back after challenges with family members about Mom......one big blow-up when sorting her belongings made me realize my heart was "hurting"...a month later came the diagnosis. Meds have been so helpful! Wish there were pills to mend families!)
Last edited by petal*pusher; 11-23-2008 at 08:58 AM.
It is so hard to see the decline in their behavior. It can be so very sad. The Days that you take the time to make the long drive out to visit with them is something you will come to cherish for a long time.
My whole life is pretty much all focused on Mom and Dad. Taking care of Mom. Helping dad take care of Mom. He is getting worn down from the day to day caregiving. I see it more and more. I see it in his eyes I see it in his physical capacity. Just like your Mom. I see the fright in his eyes that ask what is going on with my dear Nellie. He just wants his wife he always knew back. It is so very hard to watch the ALZ patient decline as well as the caregiver or spouse of that person decline from the emotional turmoil of living with someone that is so very sick..
I think what you do and give to your Mom and Dad is a lot and they must love you for it. It isn't easy doing what you do from a distance sometimes it must be very difficult.
I do understand the Afib part. My Mom is currently in a rehab facility recovering from the Gi bleed from the Coumadin which she needs to be on for the Afib. So its a no win situation. The coumadin is needed for the Afib but it causes her to bleed out. I have noticed mom like your dad is very very tired. I think the afib makes them want to sleep alot. My mom is on ozygen right now.
Every time I read your posts Deb your Mom and Dad remind me so much of my mom and dad. We are the daughters they are lucky to have!!!
My heart hurts for you. How difficult it is to watch isn't it? I can feel the pain in your words and the worry in your post. Your father has slipped so quickly and he knows that something is wrong, but is has lost the ability to be able to question what is wrong. How painful it is to watch this slipage. My dear, I ache for you. I hope that he will not continue to slide down that hill.
How awful that you mother isn't able to help him and to nurse him now that he needs help. I hope that she can sufface enough to be there to help some.
Have your sisters said anything about how they found your Dad? Did they feel that there has been a big change or are they non commital? What else has the doctor said? Or is there anything that they can do? Unfortunately when they get like this, we are usually just shoveling sand against the tide.
i would hope that they will start some physical therapy for him to help with the use of his leg and to help with keeping him as active as they can help him be. A walker will help with stability that's good. I'll rack him with my
ella and we can see who wins!
Deb, my hearat hurts for you as I know how painful it is to see your parent fail. It is like watching pa part of yourself being torn asunder and there is nothing that you can. You want then so deparately to stop and return to the dat before when they were better, if only if only..It's not fair...I know I know,, my Deb let me hug you.... -
I hung up the phone, read your post..... and I can't stop crying tonight.
Sister 4 called. Dad fell again tonight. He was getting up from his chair to go to the bathroom, ending up in the floor again. I had moved the ottoman and coffee table so there was nothing for him to hit on the way down and he was basically unhurt. But his ability to walk is definitely slipping away quickly.
Pauline.... your parents are much the same as mine. Dad can't be on the meds he needs for the Afib because of the bleeding problem. He sleeps more, naps more, is more tired and weaker by the day. Ten days ago he had an eval for a walker and didn't need one.... tomorrow they are doing another eval to see if a wheel chair is more suitable.... and he doesn't even have the walker yet.
You are definitely hearing more than I am typing IBake. Mom has been on a slow decline for three years. I handle her ok. I can put on my professional coat and get her diagnosis, deal with her melt downs, and keep going. I love her dearly but know where she is in the disease and know she's miserable. This stage can not end soon enough.....
Then there is my Dad. He has been stable for years.... and he is such a happy soul. He is kind, gentle, giving, and loving. In two weeks I have watched him deteriorate so quickly. I am very much my Dad's little girl. We have always had a special connection, even in his dementia. When I could not answer his questions to his satifaction all I had to do was say.... "Dad, do you trust me?". He always answered "YES!" So I would assure him that I can make it ok!... and all was right in his world again. He is thrilled every time I walk in his room. This has all taken me by surprise.... not that I didn't know it could happen.... I just wished so it would not. ..... and I can't fix this.
I have a picture one of the caregivers gave me when I was there this weekend. Mom is in the foreground..... the dancing fool. In the back corner is me, with a firm grip on my Dad's arms. We were dancing and the smile on his face says it all..... I'm not ready for this....
Wanted to send my love and support to you as well today. I hate to hear you sounding so worried, although we all would feel the exact same way. I'm so sorry Dad is not doing well.......it sounds like you have a very special relationship with him. Know that this illness can take away so much, but never that, never the bond that you share with him. I'm glad even though it's a long drive for you, that you're able to be there and spend time with him.
I cannot imagine how hard it is to watch a parent decline......my heart goes out to you today, and am sending many many hugs your way....
You know when you need support, we are all here for you.....
Love, Caroline xo
Dear Deb, my thoughts and prayers are with you too. I know how it feels to see your loved one go downhill and you can't do anything to help. Helpless, frustrated, and feeling inadequate and maybe even guilty. I know how it feels. Praying for you.
I'm so sorry things are going downhill so fast. I know how your feel my friend. I know how much you love your Dad. It comes through loud and clear in your posts. He must be so sweet. My Mom is having another decline. There seems to be no joy. Thats the only way I can describe the way she is now in this stage. Christmas decorations went up and her tree was done. This always made her happy. She stares alot now and doesn't seem to care. "Oh thats fine honey. Whatever you want to do"...........Her short term memory is so much worse. Its literaly seconds before she forgets.
I tried to talk to my sisters about moving Mom. She needs more care now. If one of us aren't there to help do whatever she simply can't to anything. Neither one wanted to talk about things until after the holidays. So I'll keep my mouth shut for the time being. Frankly with this stupid knee surgery looming over my head and chest cold, I'm not so hot right now myself.
Something is going to happen soon. Either the hospital or a bad fall. She isn't well. I broke down Friday and yesterday. I feel like I'm losing my gripp on things. Yesterday would have been my first sons birthday. So I ask my husband to go to the gravesite with me. I can't get on my knees right now. This is something he doesn't like to do. I had him clean the marker and put the Christmas flowers on the grave. It makes me feel better. My husband didn't feel the same. The whole thing made him shake. So I'll go by myself from now on.
I'm thinking of you and your Mom and Dad deb. They are loved and cared for
by you and your sisters. I don't see how you could do more. But you want to don't you?? I just want Mom to be herself again. I know thats not to be.
I'll pray for you,
Love to all, Chris
I too, was Daddy's girl. His only child so also his only girl. the pain is like a hot poker that sears through your very soul and renders you unable to move almost because you know that right now you cannot do anything. For some reason this is happening and there is nothing that you can do to stop it and you can barely breath with the agony that it is causing you. Yet all you want to do is to scream STOP IT! THIS IS NOT FAIR NOR CAN YOU TAKE MY DADDY! Honey, I've already been there. It isn't fair.
BUT-there is nothing that you did wrong. NOR did you skip anything, nor is there something that you missed.You couldn't have done anything different to have stopped this or to have changed this. IT ISN"T YOUR FAULT. I am so sorry hon.......
consider yourself wrapped in towels and held tight. Martha and I Have got you tight, don't worry, our shoulders are wrapped in towels, so just bawl your eyes out. I only wish I would have had this board "back then."
Hang in there Chris..... I do understand your feelings because I am there with you. It is just so hard sometimes.... But we can do this. We can fall apart, find the pieces, gather them back up, and do what we need to do. I'm with you on doing what needs to be done NOW. What better time than NOW. Grit your teeth at those that drag their feet...
My heart breaks for you IBake. You have lost so much. Your understanding and staight forward way is so valuable to me. You say the words I can't get myself to say. Then I can deal with the feelings and move forward. It does hurt, it is unfair, it is not my fault... and the reason is unknown. But facing it straight on is the only way to get through it. For that I thank you!
You are right IBake. The only fair is on October... this is definitely not fair for my Dad or myself. I did my crying last night.... a cry that hurt and made it hard to breath. Then I gathered up the pieces and went to work this morning. I had left a message for PT to call ME... not my sisters but me. She explained to me that they had done the walker eval Friday morning (before I got there) and decided that he needed walker training. So you leave him for 3 days with nothing so he can fall again?!?! NOT ACCEPTABLE. If he cannot stand without falling and you have to take the weekend off delaying the walker training then get him a wheel chair, order walk assist, but don't leave him to fall over the weekend. Then they actually ask me what had occured to change the situation..... So I gave them the medical information they should already have and told her I wanted something done TODAY!
The lady on the other end of the phone realized that I was not uninformed or uneducated on the subject and I was not taking bureaucratic excuses. I was not ugly or emotional.... just firm with logic to back up my assumptions. I will check make sure they showed up today and something is happening to help Dad.... and to help Mom deal with Dad's decline. Don't mess around with my Dad!!!!!
I fell apart for a while...... but the only way to get things done is to gather it up and keep moving. It is your love and concern that stands me back up and for that I am so very thankful. Maybe I can't do anything to stop it... but I can do what I can to make it better in the mean time. I have to be doing something.....
Again... Thank you all for your support. Not sure where my head would be without all of you giving it back to me. Thank you for your understanding. It makes all the difference to know I am not in this alone. I am hanging on to the towels not only to hold myself up but to hold you up as well.
PS..... after I posted this I realized something. I think you here on the board are the only ones I let see me cry. Somehow I know you will catch me when I fall. That says something about all of you.... Thank you for being the wonderful people you are.
Last edited by Gabriel; 11-24-2008 at 09:42 AM.
Reason: light bulb moment.....
Go get em' deb. Yep, don't mess with my Dad. That was completely stupid to leave him with nothing. Not doing their job very well. Are they?? I'll bet they will now.......
Thank you for your words today. They helped me. With all that you are going through you still find the words to help me get through this day. I'm not sure why I'm stumbling now. I'm tired and Mom is worse. Nothing I do is stopping what is happening to her. Nothing is really helping either. The decline is rapid and I can't keep up. She needs to be somewhere else.
Thank you. I'll keep moving and get over this little pity party I'm having for myself. No one else wants to attend!!!! LOL I don't want to be here anymore myself.
Sending you my heartfelt support.
I'm tired and Mom is worse. Nothing I do is stopping what is happening to her. Nothing is really helping either. The decline is rapid and I can't keep up. She needs to be somewhere else.
Isn't it amazing how we can say we don't know why..... and then give the very reason why we fall apart. You are tired and mom is worse. You can't stop it or find a good way to help that make a dramatic difference. You know what you want and your sisters are standing in your way. You can't keep up...... That's it.... you can't keep up.
We both hit a wall and need to regroup. I don't call it a pity party. It's a big old thick hard brick wall that smacks us in the face. It is necessary to back up, assess the situation, and see how to go around, over, or just jack hammer a hole in the wall to get past it. Being overwhelmed is hard. Sometimes that take help to get though. Yelling for help is not considered a pity party....
You grabbed my towel.... when you did that we support each other from falling by both hanging on. I just hung on to the one you threw me. We will get through this.... all of us.... with a little help from our friends here Hang on tight Chris.... I got the other end. We hold each other up.
YOU GO GIRL! You are doing the same fight with your dad that I did with my Mom after that I did with my Dad. When you fight with logic and knowledge and expect a response they have no recourse. That and they hear that "I take no prisoners" tone. You cannot argue with someone who know what they want and are polite and specific about it. And you have a good relationship with the staff which stands you in good stead.
You can cry with us because we have very large shoulders and have not given up our should pads from the 70's-we're slow to change you know and they will sop up tears and hold your weight when you sag with fatigue when you tire as you fight this battle. My kids say they hold all the guilt I throw out...
Keep your chin up, it hides the wrinkles and keeps the tears from dripping. You are doing good and it will be better for Dad. Therapy has found their new best/worst friend in you. Daddy will do as good as you can get him to be and we are all holding towels around you and yours...you know that, don't you?
hugs to you and you are in my prayers.....Jill
!!shaking head!! PT did go up to Mom and Dad's room, evidently as soon as I hung up the phone. According to Mom... they brought the walker and then took it away. I explained walker training to her and that somebody was there to help her when dad needed to get up.... just pull the cord. She did complain that they insisted that the area rugs and the coffee table be taken out of the apartment (Jumps for joy since I said a year ago they didn't need to be there). They were removed and while Sister 4 was taking them to Sister 3's attic.... Dad fell again. Evidently he has a little rubber in him because he's bouncing around and except for a few bruises he's fine. I have another call into PT for them to explain to me their progress.... since he fell again.
The bright spot in my day. Dad was in the bathroom, unattended while I was on the phone with Mom. I talked until I knew he was back in his chair with the facility number on speed dial on my other phone. Then Mom ask if I wanted to speak to him.... YES YES YES!! One of his new behaviors is the hearing aids, that he never got out of bed without, are now left at the bedside. But the benefit is that he can hear me on the phone without them. So I had a good 10 minute conversation with my Dad today. He is still searching for words but I knew what he was trying to say and helped him through the rough spots. Some was jumble but some was loud and clear. He told me I was his favorite.... oldest daughter. That is our joke. The ending makes it ok with the other girls. He told me he loved me. over and over. Then ask me when I was coming to see him. My visit just two days ago is already lost so I assured him it would be soon. It was so good to hear his voice.....
A lighter note.... he ask when his goats were coming. I had to wrinkle my eyebrows on that one. I finally figured it out.... goats = kids... when are the kids coming. When will he see his children. So now I am a goat!! Old Goat?
IBake.... I learned a long time ago that people, especially in a professional capacity, are well versed in how to dismiss an emotionally charged confrontation. If you have a good relationship, go to them with calm logic and facts, they have no choice but to respond. Besides that... you get more with sugar than vinegar.... thow in a little determination and things happen.
Excuse me while I wring out your shoulder pads for you. Thank you and all the others for letting me use them...... I knew they would come in handy at some point. Yes.... I am better this afternoon..... thank you all!!