Dad

My father is at the stage where he is in bed majority of the time. He has carers 4 times a day, they get him up in his chair first thing for approx 4 hours then he's put back to bed, his speech has gone, swallowing is becoming harder, he holds his food in his mouth then swallows, all food is blended now, his hands have locked and gets regular chest infections and sleeps a lot more. From first noticing the problem some 6 years ago, the last 6 months he has deteriorated so much.

I get angry and upset seeing him like this.

[NannaB]

It is so hard isn't it? My husband is similar to your dad but he does stay up all day, often asleep in his chair. Using a hoist and electric wheel chair, I do still get him out. Just remember that whatever he appears to be like on the outside, inside your dad is probably thinking as he used to.

All you can do is love him, speak to him as normal, telling him any news, reminding him of funny things that happened when you were a child or places you visited as a family and try not to show frustration or anger when you are within earshot. It's hard but I don't think anyone wants to be reminded they are the cause of anger, even if they can't help it and it's the situation and injustice you are angry at, not him.

I get angry sometimes but it doesn't help me or my husband, it won't change the situation, just makes both of us sad.

Sending you a big virtual hug.

Stay strong.

X

[Hidden]

I so understand your anger. I keep fluctuating between anger and sadness. I'm doing my best to stay strong for my husband. I pray a lot for strength to get through this, to be able to help my poor husband get through this.

This morning, out of the blue, he asked me if he has really changed that much in the past six months. I was honest with him. All the symptoms are hitting him now. At this point he can still walk on his own, albeit very haphazardly. He mostly sits and watches television. I try to interest him in different things, however he is so limited in capabilities. He also has the dementia going on with this. He talks much less than he used to and when he does it is usually slurred and slow and his voice is hoarse sounding most of the time.

He chokes and coughs while eating and drinking but he is eating quite well and constantly, which I know is not necessarily good. He is also diabetic. At this point he gets very mad and upset if I try to redirect him on anything. So I let him do what he wants. He also smokes about a pack a day. He manages to go to either the front or back porch on his own for his smoke.

Yes, I am very angry. My husband is a Vietnam vet, as if that has not been enough to deal with, now he has this. But life is not fair. The only thing that is fair is the Grace of God. Prayer does help and knowing that he will go to a better place when this horrid life is over provides some degree of comfort. Yes, I am sad. So very sad. But I just try to let me anger and my tears out in private. To stand tall and strong for my husband. To be there when he needs me.

This site is a huge help and thank you all for your daily comments and encouragement and suggestions.

Jeannie

[abirke]

I am so sorry. It's ok to be angry. shout scream have a tantrum kick cry scream some more....all in the comfort of your own bed,,,,the mattress can take it,,,,well as long its only you and the mattress....If you need support find you a grief support group or maybe someone who can solid up the spiritual side of your 'downness'. In all of this DO NOT let anger win......Be angry and sin not. Do not let the sun go down on your anger> Eph. 4:26

Take deep cleansing breaths know that your dad is comfortable...enjoy some ice cream with him and smile all the love you can muster. You love him so much . He must love you as much.....embrace your reality with calm deep cleansing breaths. I wish I had comforting words I know what you are going through.....I'm sorry darlin; I'm sorry.

AVB

[laroux]

Yes, I know exactly what you mean. My husband has been in care for a little over a year, had a feeding tube place a year before that, now he spends most of the day in bed. Can't talk, can't walk, can't manipulate his wheel chair. Still tries to take some pureed foods orally, just for the taste I think, but even that is getting more difficult, because of poor dexterity and the inability to swallow properly. And now, over the past 3 months he's developed a number of UTI's, had to have a catheter placed and went septic the other night. It frustrates the hell out of me. Every time I leave after visiting I cry, and it's every emotion going through me, anger, sadness, frustration,empathy. It's just so extremely difficult to be able to do nothing but watch as this relentless disease progresses. I guess we just need to try to be grateful for the things that are good in this situation. I'm so grateful for the staff at the continuing care facility, they are amazing! And thank God this is now and not 20 years ago, because no one would know my husband was of sound mind if it weren't for today's technology. His whole world revolves around his galaxy note (android) and his IPad, if it wasn't for those, he would not be able to communicate, even the thumbs up or down is vague. So remember you're not alone, there are lots of us going through this, feeling the same way you are.

joan

[jessybx19]

Dear jmc,

I am terribly sorry to hear that you and your dad are going through this.

It is extremely frustrating. I felt helpless many times. I recently lost my dad all I can tell you is that within the anger continue to talk to him, love him, hug him. I am sure you do these things...

I am still angry at times but I find some peace knowing my mom and I were there with him to the very end.

Like so many other illnesses this one takes a toll on everyone and there is no easy answer but you stay strong. Continue to inform yourself. Prepare for anything and everything. Have an action plan but understand that plan has room for change. Most importantly take care of yourself. You need you and your dad needs you to stay strong.

In solidarity,

Jessy