A stream of consciousness

[PalSal]

I am ok.
Things have been rocking along now for sometime....
Some good days ...some bad days.
14 or 15 years (hard to remember now) from mild to where we are today....not sure where that is but not too bad compared with others. But it has been water torture-- the slow drip drip drip kind.
No short term memory at all, but OH still walking 5 days a week. (must be careful he drinks alot with the heat--he does not remember to eat and drink on his own--under my direction)
Strange the advance. Sometimes he no longer recognises our children, if it is out of context. We went to visit our daughter in the hospital, as she had another sweet baby. He fell asleep in a chair for about an hour when he woke he was disoriented and confused (and frightened) he did not recognise her or where he was and why he was there but he got it together fairly quickly. As long as I am around, he calms down. But yesterday she came with the baby to our house, because the noise at her house was too much. She was resting with the baby in our bed, he went in and then told me someone was sleeping in our bed.....
so sad.
The gardener told me yesterday that my OH was not to interfere with his work. My husband goes out and trys to help (we live on a mountain side) and in the heat by the end of the day the gardener was tired and my husband had moved all his tools back down to storage before he had finished working. The gardener though a kind man, was very tired and really fed up with the interference. Now this will require more coordination from me in future as I must try to arrange for my husband to be away when the gardener is here.
It is so very sad that this once incrediably capable man can no longer help others. He was so good around the house always willing to help. But I understand the gardener completely, I often just want to get on with the job at hand. My OH unloads the dishwasher before the dishes have been washed. His attempts at helping often just make more work or irritate me. A few years ago he could still follow simple instructions and help. Now I just give him a broom and send him outside where he sweeps for a minute or two then reappears job unfinished.
Now most days when not out on his walks with volunteers and carer, he spends in an anxious state which I call "seek and destroy" mode....looking endlessly for the same items, keys, glasses, glasses case, wallet.....emptying the airing cupboard of all the linens, emptying drawers. When I complained to a friend about this constant searching, she said ... 'I was visiting my father in a nursing home and the professional carers just directed this person to some place to search for the missing keys which the carer knew the patient no longer possessed. " My friend does not seem to understand that the searches lead to more work for me in cleaning up what becomes destroyed in his searches.

But I need to stay in an attitude of gratitude but I find this nearly impossible at times.
So let me count some blessings now.
1. For today, he still can walk to the village and buy one item or mail a stamped letter
2. For today, he can still dress himself (with the seasonal advice taken only after serious debates)
3. For today, he can feed himself.
4 For today. he is still kind and gentle most of the time.
5 I am grateful, we have two children living in near us who are attentive. Especially our daughter.
6. I am grateful, we will have a trip for 10 days to the Italian lake district.
7. I am grateful, I still find the courage to leave him and go out and am involved in lots of other things.....(but this is changing as he no longer likes me to go away at all--but I still do it--but I feel guilty)
8 I am grateful for the volunteers who walk with my husband.


I long to be satisfied with my life as it is, and sometimes I am.....but these years from 48 to 63 I feel I have been cheated....and I often feel very isolated and sorry for myself, despite my friends and loved ones.... it is a lonely place.

But hey, I am going to a beautiful restaurant today with two women friends. One friend had stomach cancer and requires tempting with good food.....we will spurge on a lovely lunch. Hubby will be with his paid carer ( whom he likes), and I must focus on the positive.

 

[suze]

so hard...

Oh I do feel for you. You have been living with the dementia for a long time. I have been living with my husband's for 5 years....but we lose them, lose our relationship, lose our lives really...it is so sad.
Be assured many of us know exactly how you feel, praise yourself for what you are doing, don't beat yourself up about leaving him - you NEED that space! Enjoy your lunch
xx

 

[PalSal]

Oh I do feel for you. You have been living with the dementia for a long time. I have been living with my husband's for 5 years....but we lose them, lose our relationship, lose our lives really...it is so sad.
Be assured many of us know exactly how you feel, praise yourself for what you are doing, don't beat yourself up about leaving him - you NEED that space! Enjoy your lunch
xx

thanks Suz....it is lovely too get feedback on a post so quickly....I just put it out there, I do not really expect anything back. But I am always grateful to get support. One does one's best.....I have so much respect from people like Granny and others who did the long haul, and find time to be supportive to others on this site.

 

[marionq]

A lot if us will recognise the behaviours you describe, the searching, rummaging, piling things up, doing tasks and making the situation worse. I think you need to have a mental list of things you can send him off to do that he can accomplish to some extent eg hang out the washing, sweep the garden path, water the pot plants or whatever.

The big heartbreak is that we are living a dementia life with our partners when what we want is normality, conversation, stimulating entertainment, travel. You seem to be finding it where you can and that must be good for you. I take it that your husband is quite a bit older, is that the case?

At least you are living in a beautiful place. Good wishes.

 

[PalSal]

A lot if us will recognise the behaviours you describe, the searching, rummaging, piling things up, doing tasks and making the situation worse. I think you need to have a mental list of things you can send him off to do that he can accomplish to some extent eg hang out the washing, sweep the garden path, water the pot plants or whatever.

The big heartbreak is that we are living a dementia life with our partners when what we want is normality, conversation, stimulating entertainment, travel. You seem to be finding it where you can and that must be good for you. I take it that your husband is quite a bit older, is that the case?

At least you are living in a beautiful place. Good wishes.

Thanks for your comments. No, you are mistaken my husband was young he is now 64. He was diagnosed at 49 ( he is one year older than I am) he lost his job as an high level executive in 2002. No one thought Alzheimers was a possibility at the time. Our youngest son was 11 and my three older children were all at university. It has been very difficult, but all the children are now educated, and living their lives. I worked until I got leukemia a 2.5 years ago, but I am now in full remission. I make the best of each day, but I find it a struggle, even if I live in a beautiful place....that is why I try to stay grateful. Thank you for your good wishes.

 

[marionq]

His age makes it very tough indeed. What a heartbreak!

 

[notsogooddtr]

You are both so young,so terribly sad.

 

[dancer12]

I am ok.
Things have been rocking along now for sometime....
Some good days ...some bad days.
14 or 15 years (hard to remember now) from mild to where we are today....not sure where that is but not too bad compared with others. But it has been water torture-- the slow drip drip drip kind.
No short term memory at all, but OH still walking 5 days a week. (must be careful he drinks alot with the heat--he does not remember to eat and drink on his own--under my direction)
Strange the advance. Sometimes he no longer recognises our children, if it is out of context. We went to visit our daughter in the hospital, as she had another sweet baby. He fell asleep in a chair for about an hour when he woke he was disoriented and confused (and frightened) he did not recognise her or where he was and why he was there but he got it together fairly quickly. As long as I am around, he calms down. But yesterday she came with the baby to our house, because the noise at her house was too much. She was resting with the baby in our bed, he went in and then told me someone was sleeping in our bed.....
so sad.
The gardener told me yesterday that my OH was not to interfere with his work. My husband goes out and trys to help (we live on a mountain side) and in the heat by the end of the day the gardener was tired and my husband had moved all his tools back down to storage before he had finished working. The gardener though a kind man, was very tired and really fed up with the interference. Now this will require more coordination from me in future as I must try to arrange for my husband to be away when the gardener is here.
It is so very sad that this once incrediably capable man can no longer help others. He was so good around the house always willing to help. But I understand the gardener completely, I often just want to get on with the job at hand. My OH unloads the dishwasher before the dishes have been washed. His attempts at helping often just make more work or irritate me. A few years ago he could still follow simple instructions and help. Now I just give him a broom and send him outside where he sweeps for a minute or two then reappears job unfinished.
Now most days when not out on his walks with volunteers and carer, he spends in an anxious state which I call "seek and destroy" mode....looking endlessly for the same items, keys, glasses, glasses case, wallet.....emptying the airing cupboard of all the linens, emptying drawers. When I complained to a friend about this constant searching, she said ... 'I was visiting my father in a nursing home and the professional carers just directed this person to some place to search for the missing keys which the carer knew the patient no longer possessed. " My friend does not seem to understand that the searches lead to more work for me in cleaning up what becomes destroyed in his searches.

But I need to stay in an attitude of gratitude but I find this nearly impossible at times.
So let me count some blessings now.
1. For today, he still can walk to the village and buy one item or mail a stamped letter
2. For today, he can still dress himself (with the seasonal advice taken only after serious debates)
3. For today, he can feed himself.
4 For today. he is still kind and gentle most of the time.
5 I am grateful, we have two children living in near us who are attentive. Especially our daughter.
6. I am grateful, we will have a trip for 10 days to the Italian lake district.
7. I am grateful, I still find the courage to leave him and go out and am involved in lots of other things.....(but this is changing as he no longer likes me to go away at all--but I still do it--but I feel guilty)
8 I am grateful for the volunteers who walk with my husband.


I long to be satisfied with my life as it is, and sometimes I am.....but these years from 48 to 63 I feel I have been cheated....and I often feel very isolated and sorry for myself, despite my friends and loved ones.... it is a lonely place.

But hey, I am going to a beautiful restaurant today with two women friends. One friend had stomach cancer and requires tempting with good food.....we will spurge on a lovely lunch. Hubby will be with his paid carer ( whom he likes), and I must focus on the positive.

Hi PalSal:

I just finished reading your post, I'd read a bit break down & cry, read some more and cry some more & so on & so on. It's all so heartbreaking. I thought my husband was diagnosed early at 63 but 49 years young must be unbearable at times and with a small child also. How do you cope? It must be so hard. My husband was a supervisor with Ford Motor Company & Bombardier Aerospace and at times had up to 60 people reporting to him and now he doesn't even understand how to put together a sandwich and wanders around aimlessly all day looking for something to do. It just breaks my heart as I'm sure it has yours. It's all so unfair. I am just thankful that our kids are older now and they can understand a bit. I find that keeping social helps a lot but it is hard and upsetting when I see him all alone. Unfortunately people seem to have their own lives with their own problems. It is very upsetting to him because he was always such a generous man.

Many hugs & best wishes to both of you.

 

[PalSal]

Hi PalSal:

I just finished reading your post, I'd read a bit break down & cry, read some more and cry some more & so on & so on. It's all so heartbreaking. I thought my husband was diagnosed early at 63 but 49 years young must be unbearable at times and with a small child also. How do you cope? It must be so hard. My husband was a supervisor with Ford Motor Company & Bombardier Aerospace and at times had up to 60 people reporting to him and now he doesn't even understand how to put together a sandwich and wanders around aimlessly all day looking for something to do. It just breaks my heart as I'm sure it has yours. It's all so unfair. I am just thankful that our kids are older now and they can understand a bit. I find that keeping social helps a lot but it is hard and upsetting when I see him all alone. Unfortunately people seem to have their own lives with their own problems. It is very upsetting to him because he was always such a generous man.

Many hugs & best wishes to both of you.

Thanks for your support Dancer. Yes, I have to keep everything in the day. Looking back, some years were really tough, and I thought I would break but so far "with help" from family and friends life rocks along. I try not to think too much about the future or I get very upset and fearful. I am not sure what I will be capable of so I just stay in the day which so far I have been able to handle. But I do feel like my life has been eaten up by all of this. But I still have a lot of joy in outside activities and I will do my best to keep up that part of my life.

 

[PalSal]

You are both so young,so terribly sad.

Thanks for your support, NSG....it was difficult early on in the process. Now I have more acceptance about it all. That took about 10 years to find acceptance or resignation. Whatever. It is difficult for all us carers...

 

[Hopeful123]

Thanks for your support, NSG....it was difficult early on in the process. Now I have more acceptance about it all. That took about 10 years to find acceptance or resignation. Whatever. It is difficult for all us carers...

Hello Palsal, your post was very touching.I was at a meetup for carers & carees, Costa coffee putting on free drinks,cakes, thoughtful of them. One lady said to me ' what upsets me most is how small my mil's world has now become' I could not help replying, 'yes, but think how hard it is for the carer, their world is just the same but they are aware of it, how hard that is' perhaps I came across a little too strong, sometimes these things are said before you put your brain into gear. I feel for you, especially at your age, although I too feel cheated as I suppose most people do.just nicely got family all settled & doing well, time for a few years of pleasing ourselves and then hit with the dreaded D. Still like you, Palsal, I do list many things I am grateful for. Keep smiling. Best wishes

 

[marionq]

"The smallness of our lives as carers". Yes that sums it up very well indeed. My once a year respite recently reminded me of who I am but for much of the time I am buried in the minutiae of dementia.

 

[PalSal]

The Stream goes on

I have been in a happy state for a sometime, in a stage of acceptance of my life and this situation.
Then yesterday my friend came over and she wanted to go to an interior design shop here in my village. We drove down to area of the village where we had our family home was when raising the kids. We owned it for 12 years and I sold it when my husband got ill.....long story , three kids in uni, the fourth in private international school which cost a small fortune,,,needed the money. So, the house had to go.
I am not so saavy with finances and I did not make very good decisions with the profits. But we have been living debt free from many years....but own nothing....but we have had a reasonable life and educated the children well.

But back to yesterday, anyway the man at the design shop recognised me and said oh you are the people who restored .....(the name of our 1724 villa) I said yes. He then said or the man who bought it from you has now bought the 1510 farmhouse next door and is restoring it.

I was so envious and jealous. This was always a dream of my husband and I. We loved restoring the first house and always had wanted to have the farm, too.

It sent me into such despair and self pity....you would not beleive it. I crashed. Life has been fine, tolerable just rocking along and having moments of joy in the midst of all this longhaul caregiving. But I have crashed. I am in self pity for what would have been, the loss of all the dreams, the loss of normal life as we thought we would have it.

Now I am full of resentment, envy, jealously and anger at 15 years of doing for others my children and my OH. I am now just a used up 63 year old what ....not a wife, not a lover for even longer.
I am alone with a man who watches my every moment, needs me to provide for his every need and yet I feel abandoned.

This is indeed the pity pot as I am not abandoned. I have nice children, a few excellent and supportive friends. But my life is still lonely and its times like these when I come face to face with what I had expected my life to be that I become overhelmed by a saddness and wonder if I have another 15 years to face.

I have Talking Point where I can moan....as the world does not want to hear about my feelings or my situation. I must put on a happy face for the outside world, A world where many peoplel just want to feel ok themselves, so they tell me how well my husband is and after 10 minutes of meeting with him, some people insinuate that I must be the one with the problem as there seems to be so little wrong with him! Of course he does not remember who they are, or that he has talked with him. I have made him look good for any visit or ocassion by getting his hair cut, his nails manicured, ironed his clothes and told him what to wear. I prompt him by saying oh you remember 'so n so' to which he says yes. Eventually, the evening goes on he retreats and is uncommunicative,

I must try to count my many blessings or I will not get on with this day.
1. I have a nice roof over my head.
2. I have beautiful views.
3. The birds are singing outside.
4. It is a beautiful day.
5. I will try to take my husband on a car trip on Wednesday, to Lago Maggiore.
6 We have access to a lovely house on the lake (it beongs to our son in laws family)
7. A friend has loaned me a spare car to drive down to Italy.
8. My OH is 95% still a gentleman.

But I am still unhappy today. This too shall pass. Please God take these feelings away and place me in an attitude of gratitude.

 

[marionq]

Your despair even if temporary is understandable. This is not your life you are living but one imposed on you by circumstances and a disease few could predict. I have moments of wanting to do something really dramatic - running away tops the list. But we are civilised and socialised into behaving differently and so we carry on.

My husband is otherwise healthy at 84 and so there will be many years of this to come. What to do? Find pleasure, distraction and solace where we can. My two weeks respite recently was great but also reminded me what I have lost from my own life and that's hard to bear.

Thinking of you.

 

[PalSal]

Your despair even if temporary is understandable. This is not your life you are living but one imposed on you by circumstances and a disease few could predict. I have moments of wanting to do something really dramatic - running away tops the list. But we are civilised and socialised into behaving differently and so we carry on.

My husband is otherwise healthy at 84 and so there will be many years of this to come. What to do? Find pleasure, distraction and solace where we can. My two weeks respite recently was great but also reminded me what I have lost from my own life and that's hard to bear.

Thinking of you.

Thank you for writing. I understand how your respite although good in some ways was also a reminder for your loss. Running away has crossed my mind many times.......but as you say I carry on being civilised and socialised.
I am very pleased to communicate with others who get it which is why I keep coming back to Talking point. All the best and thinking of you too.

 

[Loopiloo]

Hello PalSal, I have just read your thread for the first time and how sad and moving it is. You express yourself very well, I admire your honesty. Yes we have to ‘put a face on it’ for the normal life we were once part of, but it is good, a release, to be able to write on TP where so many fully understand. So few unfamiliar with dementia do.

How you describe your husband is so like my late husband, and will be very familiar to many others here. We all have our individual situations, circumstances, yet much is all too familiar.

My husband died unexpectedly one year and three weeks ago aged 84, much older than your husband, and I am also one of the oldest on TP. Our life changed when I was in my late 50s and my husband 61, and recently early retired, and we were looking forward to enjoying the freedom to do many things. 5 months after his early retirement we were 10 days into a 6 week touring holiday in France - a week here, then there, each pre-booked - when he had a stroke and life changed forever.

Little did I know that the symptoms I thought due to the stroke, memory problems and some personality changes, mood swings, would gradually worsen and increase, although initially slow. I measure the time dementia was in our lives as 15 years but it goes back further, very slowly developing after the stroke. When suspicion, fear then certainty developed.

I remember after the stroke while my husband was in a French hospital, after spending all day and early evening with him as I did over 9 days I was sitting in a little park outside the hospital, thinking... Suddenly I realised life would never be the same again. But I had no idea at all just how much it would change and devour us, our life. I had only a vague idea at that time what dementia was. How naïve I was....

Like you PalSal I also developed a blood cancer, lymphoma (Non-Hodgkin’s lymphoma), still have it, so a double whammy. But I was not as young as you and with one child of school age as well as three older ones. Our children were older, had children of their own. However, our dreams and plans were definitely at an end and so much of what you describe is very true.

What I’m trying to say is that although older I deeply relate to your thoughts and feelings. Yet feel guilty being older, having lived more ‘life’ than you have done. I do admire how philosophical you are, how positive, the way you count your blessings, but how extremely difficult it must be for you. Heart breaking. You are a brave lady.

Sorry I have written too much. Tears have come as I have read your expressive posts, the destructiveness of this horrible disease, how it destroys both mentally and physically. Of how it robs the sufferer of themselves and the carer too in different ways.

I hope you will continue to share with us, and in doing so find some comfort and strength to continue and get through the most difficult of times. Words feel inadequate to say what I would like to say.

Thoughts, admiration, and more
Loo xxx

 

[dancer12]

Hi PalSal:

Just finished reading your post which I started so many hours ago. My heart goes out to you & to all those that are going through this. I tears people apart. It wears a person down. At night when they are tucked in bed sleeping soundly who is taking care of us (all of the caregivers). We have given up so much, our dreams, friends, careers & so much more. You are so brave, I only hope I can be half as brave as you are.

It's difficult. I cry everyday when I think about what we have lost. Today he said he's going to fix his bike so he can have some mode of transportation (he lost his license awhile back). I try to involve him in almost everything I do, but I guess that's not good enough. To do what I ask, maybe to go to the store (as if he can get anything I need). He says he needs his freedom, he doesn't want to be chained down. Don't we all want our freedom. I guess some deserve it more than others. I'm still in the bitter stage.

Anyway keep posting, keep moaning & keep venting. It helps to get things out of our systems.

Many hugs & all the best.

 

[PalSal]

Hi PalSal:

Just finished reading your post which I started so many hours ago. My heart goes out to you & to all those that are going through this. I tears people apart. It wears a person down. At night when they are tucked in bed sleeping soundly who is taking care of us (all of the caregivers). We have given up so much, our dreams, friends, careers & so much more. You are so brave, I only hope I can be half as brave as you are.

It's difficult. I cry everyday when I think about what we have lost. Today he said he's going to fix his bike so he can have some mode of transportation (he lost his license awhile back). I try to involve him in almost everything I do, but I guess that's not good enough. To do what I ask, maybe to go to the store (as if he can get anything I need). He says he needs his freedom, he doesn't want to be chained down. Don't we all want our freedom. I guess some deserve it more than others. I'm still in the bitter stage.

Anyway keep posting, keep moaning & keep venting. It helps to get things out of our systems.

Many hugs & all the best.

Hi Dancer, thanks for responding to my moan. Bless your husbands heart....mine too was very much a man who loved his machines. (first degree in Mechanical Engineering) Your man too. It is so hard. Today my OH is angry with me because I cleaned the closet and wanted to rid us of excess....must get it out when he is not looking.
Are you still dancing? Does your husband dance....that is very good for the Alz miind, music and patterning. My OH is not interested in mucsic and never danced.
All the best.
Pal

 

[dancer12]

Hi Dancer, thanks for responding to my moan. Bless your husbands heart....mine too was very much a man who loved his machines. (first degree in Mechanical Engineering) Your man too. It is so hard. Today my OH is angry with me because I cleaned the closet and wanted to rid us of excess....must get it out when he is not looking.
Are you still dancing? Does your husband dance....that is very good for the Alz miind, music and patterning. My OH is not interested in mucsic and never danced.
All the best.
Pal

Hi PalSal:

Your courage is so enlightening. I just hope to have half as much courage & energy as you. You have been through so much and you are still so upbeat and see the good in everything. My husband was a supervisor and he was good at it, his employees enjoyed working for him. He was always so fit, jogged to keep himself in shape. He boxed when he was younger, I used to tape fights for him when he was working so he could watch them in his spare time. Now I have about 100 tapes of fights that I have to dispose of without him knowing or else it will start a brawl of our own. If he sees them in the garbage he'll get angry and retrieve them and I'll have to wait another couple of weeks to try again. Sad but also funny.

Yes I am still dancing but he shows no interest in it. Thanks for asking. We had a visit from social services today and my husband was asked questions. Q - What year is it?
A - 19??, Q- Where do you live? A - Toronto (we live in Mississauga) Q - What day of the week? A - Don't know. Q - What street do you live on? A - Everall Road. (he got that right). I'm glad he didn't ask him what country, we would probably be living in Africa instead of Canada.

SO SO SAD.

All the best to you & your husband. Keep smiling. Maybe one day I'll be as upbeat & courageous as you are. For today I'm still bitter.

 

[PalSal]

Sad truth

We have been in Italy. with my daughter, son in law and two small grand babies. OH has been withdrawn and confused. Our little granddaughter is very sweet pulling on him trying to get him to interact - she loves him. She seems to innately understand that she needs to help him. She is only two. But most of the time he is on another planet, lost in his Alzheimer's.
We spent three days with them, but now they are gone and I am alone with him. Holidays are difficult ,and most the time I do not attempt it. As he is even more confused and resents having to be told what to do. Where we are sleeping, where is the bathroom, what country are we in? Pleased It is so beautiful here. Soon ( Monday) old friends will join- being with others is a blessing. I can do 30 hours- hopefully he can, too.