Feeling sad

[amnmont]

In the last few days mum has been bowel incontinent lots and I just feel so sad that she is getting worse so quickly. Her speech doesn't make sense and she seems so lost. Not sure how much longer my dad will be able to care for her and I am sure he feels guilty for that. As a family we think she'll be in a home by the end of the year. I just get so upset by it all - she was a great mum and would be absolutely mortified if she knew she was like this - so reliant on others and having to be cleaned up by others after having an accident.

I'm not expecting any answers from you guys - just need to vent!

 

[connie]

We don't have the answers Amnmont, at least I know I don't.

We do have empathy, and many of us will have been in a similar position to you and the rest of the family. That is where TP can help. Somewhere to vent.

Thank you for sharing your feelings.

 

[BeckyJan]

Hello:

Its good that you could 'let go' your feelings here. Many of us will share and truly understand your sadness.
You and your Dad seem supportive of each other which would please your Mum.

Take care Jan

 

[Grannie G]

Hello amnmont

Although you`re not expecting answers, because there aren`t any answers, please accept some understanding.

Although my husband does not yet seem at the stage of your mother, I can really identify with her seeming to be so `lost`.
My husband often has a puzzled look on his face as if he`s trying to make sense of the world.

Please try to reassure your father. He should never feel guilty if the care your mother needs becomes too much. He is only human and cannot function at this level 24/7. He needs some rest.

Take care xx

 

[Helen33]

Hello Amnmont

I just want to say "hello" really and can understand some of the sadness and stress of living with this disease. I am glad that you have Talking Point as a place to vent.

Love

 

[Skye]

Hi Amnmont

I too understand your feelings. My husband has been in care for a year now, and it still hurts.

But please encourage your dad not to feel guilty, there comes a time for most of us when we have to admit defeat and hand over to the professionals. I miss my husband so much, but I could never hope to give him the care he is getting in his NH.

Incontinence is very difficult to deal with, and I think it is perhaps harder when the family is doing it. Cleaning up is perhaps easier to accept when a professional carer is doing it.

As for looking lost, I'm afraid that is quite normal. The world must be a very confusing place for someone in dementia.

I'm not surprised you're feeling sad -- I doubt is anyone on this forum would claim to be happy, except for rare moments of 'normality', but we do all try to support each other. Never be afraid to post.

Love,

 

[moomin]

I understand.

My mother inlaw was only diagnosed a few months ago but she seems to be progressing very quickly,she's having bad falls her speech comes and goes and she disapears and the police have had to find her.My father inlaw is at his wits end but won,t ask for help.when he did but her in restbite for a week she walked out after a day and was missing for 4hrs.it's hard work but now i've found this sight all the advice and talking to people in the same position helps.be strong Moomin xxx

 

[fearful fiona]

Hello Amnmont,

I understand too, it is so distressing to see a loved one deteriorate. My Mum is like yours, she doesn't make a lot of sense and is doubly incontinent. Like you, I find that so difficult to deal with. When she was in hospital I had to do her washing, and it distressed me greatly.

Now she is in a nursing home and her washing is done there which is a great relief. I even find that if she wants to go to the loo when I'm visiting, I ask a carer if they can take her. I just find it so difficult because she's my Mum and I do feel guilty that I can't do that for her.

Hazel is spot on when she says that we get to the point where we do have to hand over to the professionals. They are well trained in every aspect of dementia, which we are not.

Never hesitate to vent your feelings on TP, we all do it and no-one will ever judge you here. We are all in the same place and mostly feeling down.

Good luck.

 

[Lynne]

Hi Amnmont

Not being flip, but "everything everyone else has said" from me, plus my thoughts re. your Dad.

Bowel incontinence is very difficult to deal with, whichever end of it you are on. My Mum has just started to lose control in this way, and she feels SO ashamed, SO humiliated, SO disgusted with herself. It is doing her so much damage mentally, and just the thought that she's wearing a pad is enough to reduce her to tears each time she 'discovers' it (she forgets, between times,only to experience all those hurtful, negative emotions all over again.)

Your Dad is obviously going through hell himself, experiencing many of the same emotions, maybe even physical revulsion at the nature of the things he's now having to do ( the first time I cleaned up my Mum up that way, I had a real struggle not to gag & retch. 'They' say the 1st time's the worst!) It's a natural reaction, I believe, regardless of the fact that you may love the patient with all your heart.

I'm not clear if your Dad has any help coming in to help with washing & personal care of your Mum. If he DOESN'T, perhaps you could persuade him to accept help by pointing out that it might enable Mum to stay at home with him for longer (IF that's what you want as a family). And it may be less stressful for her - given that she can't express herself very well now - to have personal care from a paid carer than from a family member.

Forgive me if I'm off beam on this, just my thoughts.

 

[Debby Short]

Hi Amnmont

Your Dad should not feel guilty, but it is easy for us to say 'don't feel guilty', but how hard it must be for them. They have been married for meny years, and think they are going to retire together and be happy. My Dad always promised my mum he would keep her at home. Like your mum she never really understood that she was ill.

Mum just got so violent and Dad couldn't cope anymore. Mum went into a home last wednesday (diagnosed less than 2 years ago). Dad cried loads.

What I am saying is that you are not alone, although it most probably feels like it, you have so much support on TP.

Make sure you have support from SS, your CPN and the Alzheimer's Society (Dad could not have coped with them). If you are not getting the support, push it.

Dad did not tell us everything, until we found him with scratches on his face and bruises on his arms, so make sure you talk loads to your Dad.

It is so hard from our parents, I found the rolls were reversing - I was becoming the parent - had to make decisions for Dad. Your Dad has you for support, and you make need to make some of the decisions for him at some time. I have a sister & 2 brothers so my Dad had 4 of us, but we consulted each other before we ever pushed Dad into doing anything.

sorry very long reply but I hope it helps, just to know that you are not alone in this.

Good Luck
Debby
xxx

 

[amnmont]

Thanks for your replies. My dad still works too which is when it's down to me and my sisters to care for mum. Some days he gets just three hours sleep. I worry about him too - he has high blood pressure, high cholesterol, overweight and with all this stress is a prime candidate for a heart attack. Mum has just started in the last few weeks to go to a day unit which gives my dad a break but he's very proud and hasn't wanted any help.
I personally think it could be time to have an extra help - even if a few hours a week just to give my dad a hand. We all do what we can but with working and young familes ourselves it doesn't seem to ever be enough which is when the good old guilt trips in again!
Who do we go to for help? I kind of feel that we're just left to get on iwth it. I have no idea how to move on and ask for help.

 

[Carolynlott]

Hi Amnmont,

I don't know if the incontinence could be a side of the effect of any medication your Mum is taking. My Mum strarted on rimanyl a few months back and not long after got diarrhoea. It became a big problem during the night as she became bowel incontinent and very distressed at what was happening to her - so I told her to stop taking it and her consultant agreed that this was the right thing to do. I have to get back to him now the problem has cleared up - but I'm not holding out any hopes that any alternative won't have the same side effect. My Mum is very thin and I am sure any medication is going to go straight through her.

Best wishes,

C