• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

In there somewhere.....

PalSal

Registered User
Dec 4, 2011
868
Pratteln Switzerland
Dear TP friends,
Yesterday, in spite, of prayer meditation and listening to my daily Richard Rohr podcast, my tone of voice in the early morning with Nick was one of annoyance. Once we had our hike in the mountains, and picked wild raspberries and strawberries, I was less ugly….that is the way it works for me. Most of the rest of the day I paid little or no attention to Nick. I know the walks in nature really help me to get rid of the tone of voice and make me more human with him. But there is so little love, just duty and promises. Then I just get on with my own day.

Yesterday, my brother, John, called me to discuss Carolyn’s (my baby sister in New Orleans, who has Huntington's Disease) carehome. It is no longer allowing the visitors outside on the patio because of the Covid19. You may remember TP friends, three of my siblings suffer from the Huntingtons disease themselves. (All three are in carehomes now) Blessedly, I do not have the disease, nor am I a carrier. As there has been a spike in COVID cases in Louisiana restrictions are again in place in the carehome. So, anyway he was visiting with Carolyn thru a glass plate door and another patient ( a big man) hauled off and hit her in the head. The attendant was on the other side of the room. Carolyn was knocked to the floor. John was so upset ,he went to see the manager of the home immediately, who explained that the patients are upset by the visits to other patients. (Who knows these patients all have dementia and other horrible problems) That our sweet, little, defenseless baby sister who can barely walk, barely communicate and is devastated physically and emotionally by Huntington's is subject to physical violence in such a place is a hard to hear of and hard to accept. I have to face that violence in carehomes is a real possibility. But I know that Carolyn’s boys (who are now young men and took care of their mother at home for 5 years after their father died) needed to get on with their lives and it is not anyone’s fault, but I am so very very sad for her. She has always been a gentle sweet soul. How do I deal with this, I must give her safety and care over to God. As there is nothing I can to do to change her situation. Why she must be in such a state, have such a terrible disease and such a difficult life is hard to understand. How is this part a greater plan and what good does it do for her to suffer so. So, when I am rough with Nick or speak to him in a nasty tone of voice I must remember that caring for him is a responsibility to him, to his family and to our children.... I must keep trying to do my very best at it.

One way is to give him a hug and try to express again the love I once felt for him…..it must still be in there somewhere.

I have shed a few tears this morning ……mostly for Carolyn, not for me. But once again I feel the weight of God’s plans and I feel I am trudging again. I do not expect a straight line of consistent emotional stability and I long ago gave up the concept of constant happiness. I am grateful for the moments of joy. I do have when I am with my children, my grandchildren, my dear friends and in nature. May I be aware of joy today….and may my siblings, especially my two sisters, feel my love for them from a distance. I fear that I may never get to USA to see them again.

My life is so good, especially when compared to my suffering husband's situation and my afflicted siblings. I will do my best to make Nick's life as good as it can be today. By helping him, I sustain integrity and can live with myself. For now
 

RosettaT

Registered User
Sep 9, 2018
497
Mid Lincs
Oh PalSal, You are not the only one in tears, I feel for you and your siblings. Life is so very cruel sometimes.
I love my OH beyond measure, but it doesn't stop me getting irritable with him sometimes.
Thank you for reminding me to try that little bit harder. I so admire all who care for someone they no longer have feelings for, I don't know how you manage it.
Bless you all, you are so strong.

(((Hugs)))
 

canary

Registered User
Feb 25, 2014
12,907
South coast
(((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))

I wish I could do something to make your life better, but all I can offer is a virtual hug. Believe me, it is heartfelt. There are many sad things in this broken world, but I cannot give up my belief that eventually it will all be made right.
 

LuLuP

Registered User
Apr 3, 2020
11
Dear PalSal, thinking of you, and hoping for you to find treasure in the darkness. You write so well and your words are inspirational. x
 

White Rose

Registered User
Nov 4, 2018
679
You have to question what's the point of it all - why so much suffering. I'm trying to count my blessings every day, so many lives so much worse than mine. Here's a something beautiful I heard yesterday - The Day After Tomorrow sung by Emily Barker and The Red Clay Halo, hope you like it:

 

PalSal

Registered User
Dec 4, 2011
868
Pratteln Switzerland
You have to question what's the point of it all - why so much suffering. I'm trying to count my blessings every day, so many lives so much worse than mine. Here's a something beautiful I heard yesterday - The Day After Tomorrow sung by Emily Barker and The Red Clay Halo, hope you like it:

I did like it ...peddle steel guitar and violin and cello. This girl, Emily Barker has a lovely clear voice. Thanks White Rose.
 

Hazara8

Registered User
Apr 6, 2015
489
Dear TP friends,
Yesterday, in spite, of prayer meditation and listening to my daily Richard Rohr podcast, my tone of voice in the early morning with Nick was one of annoyance. Once we had our hike in the mountains, and picked wild raspberries and strawberries, I was less ugly….that is the way it works for me. Most of the rest of the day I paid little or no attention to Nick. I know the walks in nature really help me to get rid of the tone of voice and make me more human with him. But there is so little love, just duty and promises. Then I just get on with my own day.

Yesterday, my brother, John, called me to discuss Carolyn’s (my baby sister in New Orleans, who has Huntington's Disease) carehome. It is no longer allowing the visitors outside on the patio because of the Covid19. You may remember TP friends, three of my siblings suffer from the Huntingtons disease themselves. (All three are in carehomes now) Blessedly, I do not have the disease, nor am I a carrier. As there has been a spike in COVID cases in Louisiana restrictions are again in place in the carehome. So, anyway he was visiting with Carolyn thru a glass plate door and another patient ( a big man) hauled off and hit her in the head. The attendant was on the other side of the room. Carolyn was knocked to the floor. John was so upset ,he went to see the manager of the home immediately, who explained that the patients are upset by the visits to other patients. (Who knows these patients all have dementia and other horrible problems) That our sweet, little, defenseless baby sister who can barely walk, barely communicate and is devastated physically and emotionally by Huntington's is subject to physical violence in such a place is a hard to hear of and hard to accept. I have to face that violence in carehomes is a real possibility. But I know that Carolyn’s boys (who are now young men and took care of their mother at home for 5 years after their father died) needed to get on with their lives and it is not anyone’s fault, but I am so very very sad for her. She has always been a gentle sweet soul. How do I deal with this, I must give her safety and care over to God. As there is nothing I can to do to change her situation. Why she must be in such a state, have such a terrible disease and such a difficult life is hard to understand. How is this part a greater plan and what good does it do for her to suffer so. So, when I am rough with Nick or speak to him in a nasty tone of voice I must remember that caring for him is a responsibility to him, to his family and to our children.... I must keep trying to do my very best at it.

One way is to give him a hug and try to express again the love I once felt for him…..it must still be in there somewhere.

I have shed a few tears this morning ……mostly for Carolyn, not for me. But once again I feel the weight of God’s plans and I feel I am trudging again. I do not expect a straight line of consistent emotional stability and I long ago gave up the concept of constant happiness. I am grateful for the moments of joy. I do have when I am with my children, my grandchildren, my dear friends and in nature. May I be aware of joy today….and may my siblings, especially my two sisters, feel my love for them from a distance. I fear that I may never get to USA to see them again.

My life is so good, especially when compared to my suffering husband's situation and my afflicted siblings. I will do my best to make Nick's life as good as it can be today. By helping him, I sustain integrity and can live with myself. For now
There is much narrative just now evolving out of this pandemic. The sense of isolation, vocational loss, the often new sense of focus and doubt, on one's ability to manage unusual situations and restrictions et al. Your post informs those who are indeed fortunate enough to be free of this world of Caring for a loved one with dementia, that such challenges are a way of life and long term. The many, many folk out there who are playing the role of sole Carer amidst both the restrictive nature of Covid-19 and the daily anxiety, despair, physical demands, psychological confusion, are living this status quo each and every day, each and every breathing moment. With talk of easing lockdown to allow recreational relief or a well earned holiday, one reflects on the raw fact that such things do not enter the arena of Care at all for so many. Thus this pandemic, whilst clearly tragic in its reach and contamination and its claim on so many lives, nevertheless for many who are living the reality of Care, does not perhaps disturb fundamentally, does not shock nor disrupt as such, because the whole spectrum of angst, expectation, despair, self worth, controlling anger, sustaining continuity of vital care despite everything, lack of sleep, lack of respite, that sense of hopelessness and helplessness combined and the cold hard awareness that it cannot improve for the loved one in one's care -- all of this and more tempers the perception, makes for an almost " so- so" attitude owing to the raw fact that one's daily life already has been party to nearly every facet of human frailty, anguish and heartfelt pain that one thought possible to experience in a life.

So, yes, l think many on here will concur with you with compassion and complete understanding. Covid-19 is a new phenomenon for us all and will see some positive light forthcoming because it simply has to. Like when a war ends.

Care embraces so much more than is generally known and for the Carer who nurtures and protects a loved one, it is probably the most worthy role that a human can play in this violent confused world. The communal " clapping" we all understand. But the " silent " ongoing Care which goes unsung, is age old, seeks no reward and is blessed with the light of a love which knows nothing of the self.
 

jennifer1967

Registered User
Mar 15, 2020
348
a very sad post but very well written. brings into perspective the stupid things i moan about. hard enough having to care for someone here but hard in another country. i agree with hazara8 in that when the pandemic is over, i will still be caring for mu husband so as he has sheilded for last four months the situation the same and will get worse and the carers will go back in the shadows and forgotten just like they were before but bonus is ive still got him to love and cherish. that is the best thing of all that all through this pandemic i had an aim to get him through it and out the other side and ive achieved that
 

White Rose

Registered User
Nov 4, 2018
679
The communal " clapping" we all understand. But the " silent " ongoing Care which goes unsung, is age old, seeks no reward and is blessed with the light of a love which knows nothing of the self.
Wise words as always from you @Hazara8. In the last few years there has been perhaps a bit more attention paid to the role of a carer of a PWD and the disease of dementia itself, the odd film, news report or, TV programme but generally it feels like we are an invisible group. Those not directly involved are quite happy to ignore us and the disease, so we all struggle along, trying to do our best. I have to admit I ignore cancer charities now and the people who ask you to forward FB posts in support, all that stuff. Cancer has received so much attention, millions of pounds raised by charities. Friends and family have had cancer, I know what it's like and I've supported them as much as I was able - and they get a lot of support from the NHS. But they don't have a clue what people with dementia and their carers go through. With a few exceptions, usually those who've been through it with a loved one, most seem frightened of it - they don't want to get involved and prefer to forget that it exists!
 

Hazara8

Registered User
Apr 6, 2015
489
Wise words as always from you @Hazara8. In the last few years there has been perhaps a bit more attention paid to the role of a carer of a PWD and the disease of dementia itself, the odd film, news report or, TV programme but generally it feels like we are an invisible group. Those not directly involved are quite happy to ignore us and the disease, so we all struggle along, trying to do our best. I have to admit I ignore cancer charities now and the people who ask you to forward FB posts in support, all that stuff. Cancer has received so much attention, millions of pounds raised by charities. Friends and family have had cancer, I know what it's like and I've supported them as much as I was able - and they get a lot of support from the NHS. But they don't have a clue what people with dementia and their carers go through. With a few exceptions, usually those who've been through it with a loved one, most seem frightened of it - they don't want to get involved and prefer to forget that it exists!
I do so agree. The cancer debate is somehow tangible, universal , touching us all, if indirectly so. Dementia negates all things which are generally considered and understood. It removes even the clinical addressing, in as much as the " unknown" which makes for the " reality " in the one living out dementia, is precisely what confronts the Carer. I have witnessed experienced Carers ticking off a resident for unacceptable behaviour and not really understanding that the dementia is the one misbehaving. Once capacity is lost then everything that takes place must be seen as subject to a damaged mind. Else we revert to the "innocent" reaction/ perception of those who have never known close and continuing proximity with someone living out this disease.

A seasoned psychiatric practitioner openly confessed to my face, that she was just beginning to learn about the true meaning of dementia, because of her mother ( Alzheimer's disease) . Up until then her theoretical background was intact. Not now.
My warmest wishes and thanks for your kind words.
 

jennifer1967

Registered User
Mar 15, 2020
348
the publicity about dementia seems to rely on the carer of that person eg. barbara windsor, prunella scales and iris murdoch the writer; its seems that its usual the other half that are in the media because of the cause and fiona phillips who both parents had dementia has brought insight but there are not enough people drumming up the understanding. it is not a disease that old people invariably get. that dementia used to be called senile dementia.but people that understand the most is the carers and have to care for their love one unlike cancer that looks after that person in hospital or have so many different support services.i think thats what the difference is. if im wrong im sorry
 

White Rose

Registered User
Nov 4, 2018
679
Don't get me wrong, cancer is a horrendous and scary disease, my dad had lung cancer, so did his mum, my mum and a friend have had breast cancer (and thankfully survived), but somehow it's easier for people to understand cancer and also you are dealing with a person who still has full faculties, can tell you about their pain and their feelings. Nothing like dementia where it seems that people don't understand, even many GPs I think, they prefer to turn a blind eye and assume that we're coping. I'm sure many people are scared when they come into contact with a person with dementia, it's the unpredictability. I would have been just the same, it's only when you care for a PWD on a daily basis, year after year, that you have a real understanding of what the sufferer and the carer are going through.
 

PalSal

Registered User
Dec 4, 2011
868
Pratteln Switzerland
I will repeat some of my story for those of you who have not heard it. My husband was 49 when he lost his last job. He was trying to cover up what was happening to him and had been happening for some years....as least 5 years prior to that. We live in Switzerland which is a wonderful country, but accessing help as a foreigner was difficult. By the time he was actually diagnosed his company which was part of British Telecom had been sold off and no one took any responsibility for his disability. (Hold on everyone I am getting to the point....there is a dot to connect) So, I took charge of the family, selling off assets (our home, paying back tax bills which had not been paid- as he was so confused but as he had a masters in Finance and had always taken care of that side of life---I had been uninvolved in the family finance) I took a full time but unsatisfying job at one of the pharma companies here, and managed to get all the kids educated (our youngest had been 11 when the nightmare started)

But anyway in 2014, my last year working at Pharma, I started getting ill a lot. But as there was a restructuring at the company, I was offered an early retirement package.....but then while on garden leave I was asked to return to work until Jan 2015 for an additional bonus package. I went to work every day no matter how I was feeling.

In January, the job over at last I went to bed for about 2 weeks. Finally, I went into the doctors to discover I had leukemia. All the while getting no support for Nick, other than my children coming around.

The university hospital took wonderful care of me, there was all kinds of support for cancer patients. They asked if I would like to have speak with a psychiatrist or social worker. What help did I need? At first I said , never mind I do not need anything. (I had actually thought upon diagnosis....."This is wonderful news I am going to die and someone else can deal with Nick and his Alzheimer's.")

Any way on reflection I said, yes I would like to see all these people, I do not need help coping with the cancer, I need help coping with my husband's Alzheimer's. Where upon the first person I saw said, oh but we have the University Memory Clinic and they will help. I told the psychologist the UMC had diagnosed him in 2005 and all that had been offered was the diagnosis and then we were on our own really. (part of the problem was our poor language skills and nothing offered in English) As we had both worked for global companies we did not need German to work.....but now our language issues created lots of limitations. She assigned a social worker, who could not believe that was the process . After investigating, she reported back to me that there was little or no help offered. I said ....yeah that's right. But then thankfully, all these groups spoke amongst each other ---the Swiss Alzheimers associaiton (who over about 10 years I had raised over 60K for the charity) , the Memory Clinic and the University Hospital. I got help. Became part of a scheme which allows me to hire people (not companies to help me care for Nick) to the tune of 27 CHF a year, I had to make contracts in German, hire individuals by advertising and word of mouth and file the paperwork with the appropriate gov. agency monthly and annually. Also, I got assistance via the cancer unit filing all the paperwork for his disability payment from the Swiss, because I was having cancer treatments. Things got better.

I got better, I had a relapse in 2018, but recovered quickly and was in remission again by December 2018. I am feel very supported today. The woman who used to be the President of the Alzheimer's association became the regional director of aging in our Kanton. She has taken a personal interest in our well being. She calls me every couple of weeks since Corona. It was her suggestion that I start getting Meals on Wheels for Nick once a day so that I did not need to cook and shop so much. She gave me the details to contact. I did, the organization said that due to the demand of Corona they were not taking on any new clients for Meals on Wheels. I called her back, she made one call, the next day he had his first Meals on Wheels.

When it was just about Alzheimer's there seemed to be no resources for assisting us. I believe my leukemia was a gift from the God of my understanding, to help me get the help I needed to care for Nick's Alzheimer's. That is kind of how it has worked for me. But I do support the concept that there are many more resources to support cancer patients........for the most part Alzheimer's we are a forgotten lot. Especially.....early Alzheimer's where young families are financial effected and spouses are dealing with work lives, children's educations and care of a highly disabled person (even if they look normal & of course, The Alz patient thinks he or she is completely rational- no self perception)

I think it is difficult for all people caring for disabled children, victims of accidents and disease, and then us. But one of the big problems for Early Alzheimer's is that most people think Alzheimer's is only about pensioned and elderly folk. The Early On Set families have additional problems to overcome particularly financial. I think perhaps it is better that in 2005.....more awareness.
 
Last edited: