A Carer's Guilt

Can there really be a lighter side to these neurological diseases?

While I am the full time carer for my wife with PSP, my brother is carer for his wife with mid-stage Alzheimer's. His wife is suffering from really bad short term memory loss, and this has placed a lot of strain on the home/domestic front.

My brother explained this week that "he lost it" (meaning he became angry at a situation with his wife. This would be totally out of character for him, because he's usually very even tempered and loving). He said he just had to go out of the home for a couple of hours to cool off. While out, he felt great remorse and guilt, and knew the problem was "the Alzheimer's" and not his wife. He knew he had to say "sorry", and ask her forgiveness.

He went home and said to his wife, "I'm so very sorry for the way I acted this morning during our argument"

She said, "What argument?"

[jillannf6]

hiit si sad that we do not know wha tis around the corner

but these neurological probs will get worse as rhe population gets older ( a joke there!)

di you mean there ot be a lighter side ot your post? i hope so

i get a lot outfo yoru posts - u r v knowledgeable about THE PSP and like illnesses

so please carry on if in a lighter vein

lol Jill

:--)

[shasha]

it reminds me of a joke that jill sent me yesterday !!

[peterjones]

a sad but good story mr strelley you just keep on keeping on mate i like to read your comments

peter jones queensland australia psp sufferer

[Kathy]

Hi Strelley,

This did make me smile! I'm happy that your sister-in-law wasn't distressed by the exchange! We have to laugh sometimes - it's either that or cry!!!

I do hope your brother has some help caring for his wife - sounds like he could do with a sitting service at the very least to enable him to get a break.

Thanks for sharing this with us

Love

Kathy x

[SharonAB]

My fridge has some "pick me up" notes on it - i've just added another -

"Forgot what should not have been, Enjoy what is and meet new friends everyday"

Regards,

Alana - Western Australia

[NannaB in reply to SharonAB]

A brilliant message.

Nanna B

[JudyJ]

Love it!

[summergirlx476]

Good humor!! We all need a laugh...thanks!

[Hidden]

Hi Strelley. These sorts of posts are much nicer and easier to read for people feeling fed up and desperate. It must be less miserable for you to write them too.Do keep it up!

Dianne x

[NannaB]

My mum had Alzheimers for 17 years before she died and we still remember the "funny" things and try to block out the rest. Early on, before diagnosis, I took her into a changing room in a department store as she needed a new skirt. I decided to try one on as well. We went into a cubicle which was opposite the entrance to the changing area so mum could show dad what she had on. I took my skirt off, was standing in my nickers about to put the skirt on when she flung open the curtains and shouted, "What do you think of this JIm". I looked up to see all the waiting men and others in the main store, laughing. I quickly closed the curtains and told mum to put her own skirt back on. When I came to dress, I couldn't find my own skirt anywhere. How could it have disappeared? Mum had it on under her own skirt. That was the day I realised there was something more wrong than just forgetfulness.

A few years later, as she accused us all of not telling her anything, I gave her a memory book, writing down all significant information. We had a big family meal on their Golden Wedding anniversary. Once again we got, "You never told me about this, you keep everything secret". "I wrote it in your memory book", I told her and her reply was "What memory book?

Caring for mum was hard, but she rarely appeared to suffer as she was physically fit and once she got over the aggressive stage, seemed content in her own little world. It was harder for us. Caring for my husband is totally different as I know he knows what's happening to him.

Something that made him cry with laughter this week....I looked after our grandchildren aged 3 and 6 overnight. The three year old patted my stomach very gently and said, "Have you got a baby in your tummy Nanna B". "No dear, I'm just fat" was my reply.

Nanna B

[Hidden in reply to NannaB]

Thank you Nanna B for these lovely stories. They are much appreciated. It's important to always remember the good times and the fun times amidst the day to day difficulties brought on by these diseases. I see from previous posts your husband has had PSP for about 6 years. It's a comfort to have a forum like this to share with other carers. Then, just as important, I really admire those on this forum who have PSP (or similar) and share their thoughts and concerns and questions.

So, let's hope a few more can send similar stories like yours, to keep us smiling through the difficult times.

Take care.

[jimandsharynp in reply to NannaB]

Nanna B, Thanks for making this day a bit brighter!

Jimbo

[jimandsharynp]

Yes, there are those times when we are angry and it appears we are angry at our loved one when it is really the disease. There are times I talk loud to my wife because she is either doing something she shouldn't do (dangerous) or not doing what I'm trying to get her to do. This disease is VERY frustrating for us caregivers. However, my wife never seems to get frustrated by it and rolls with every punch PSP can hand her. Anyone else related to the PSP patient not angry with the PSP? My first wife died from CJD another brain disease that moves VERY, VERY quickly. After her death I had a difficult time wondering if I was compassionate enough, cared enough, loved enough, did the right things, and much more. I think this is normal for us caregivers. I did my best and was as compassionate as could be but the doubts are still there. I'd never treat a wife badly. I think the disease brings out the worst in us which for most of us is not very bad at all but seems to be bad. We have to say "I'm sorry" when we feel we have said the wrong thing or acted out of character. We have to remember it's the disease we and our loved one are fighting and angry with and not our dear, dear loved one. Just as it is difficult for the PSP patient to realize their limitations now they have PSP it is equally hard for the caregiver to do the same (remember their limitations) at times. We want our loved one to be like they always were, able to do what they always did, able to talk and walk like they always did. Often I find myself urging my dear wife to do what is becoming more difficult for her. Seeing her becoming more and more in the control of PSP is so heartbreaking. The tears come easily these days when I'm alone. Sorry to vent her but had to get these things out.

Jimbo

[NannaB in reply to jimandsharynp]

Jimbo, I've always been a very positive person and never dwell on what could have been but make the most of every day but last week I broke down and sobbed until I didn't think there were any more tears left in me. My husband suddenly seemed to take a turn for the worse resulting in several incidents of incontinence which had never happened before. He was up every hour in the night with me changing him. It continued during the day and I was exhausted. I really didn't know what to do. Although the surgery nurse said he didn't, I am sure he had a urinary infection and thankfully things have gone back to how they were before with no more "accidents". It must be so hard to have to care for your wife having already been the caregiver to your first wife. I'm sure all carers lose it sometimes; I know I get frustrated when my husband does things that could result in him injuring himself and like you, I frequently tell him I'm sorry. Yesterday we had an appointment and needed to get in the car, My husband saw something on the floor he tried to pick up. I told him to leave it and said, "Come on, we've got to be quick". He replied, "I don't do quick". We both laughed. We did get to the appointment on time.

Nanna B