My dear husband has been in care for twelve months.
I miss him - his physical presence, his care for me, his mind, his jokes (even the bad ones), the sharing of memories.
I don't miss the delusions, the continual laundry, the paranoia, the lack of sleep, the need for constant vigilance.
I'm so grateful for our family, my friends, a wonderful CPN, the good care home and the kind, caring staff who work there, my friends on this forum.
I enjoy my visits to see him, the occasional kiss, his smile when he sees me walk into the room, our bizarre 'conversations', watching him sleep, helping him to eat.
I miss him.
Hello Worrals,
How I understand how you feel, I am glad that your husband has good care which at least is some comfort. Although the people where my husband is are nice people they do not understand good care which is not surprising as most have never worked in the care world before.
The Pd Consultant hasn't seen my husband for at least eighteen months he just abandoned him and he hasn't seen a PD nurse for over a year.
My husband is getting very weak now having lost about 4 stone in 4 months but unfortunately he can still get aggressive so I am unable to get him to a home near me where I could go in everyday to be with him.
When you have been together for almost fifty years it just breaks your heart doesn't it, I can never understand that to look after children there are all sorts of rules and training and yet for the disabled and elderly anyone can just walk in and look after these vulnerable people, the money these homes get they should provide the best possible care.
Thinking of you
best wishes
vivian
How I understand how you feel, I am glad that your husband has good care which at least is some comfort. Although the people where my husband is are nice people they do not understand good care which is not surprising as most have never worked in the care world before.
The Pd Consultant hasn't seen my husband for at least eighteen months he just abandoned him and he hasn't seen a PD nurse for over a year.
My husband is getting very weak now having lost about 4 stone in 4 months but unfortunately he can still get aggressive so I am unable to get him to a home near me where I could go in everyday to be with him.
When you have been together for almost fifty years it just breaks your heart doesn't it, I can never understand that to look after children there are all sorts of rules and training and yet for the disabled and elderly anyone can just walk in and look after these vulnerable people, the money these homes get they should provide the best possible care.
Thinking of you
best wishes
vivian
Hi Worrals , I am pleased you have found a nice care home for your husband, it must be a relief to know he is well cared for. I am not sure how I would feel if my family thought it best for me to go into a care home. So far no one has mentioned it. Although I am only 61 years old I inherited PD from my wonderful Grandma. My husband says he will always look after me but no one can predict the future. So, I guess time will tell. Love BA x
Hi Vivian, It must be so hard for you too but in a different way. I am finding it very hard knowing what to say, I just wish it would all go away most days, but I have my husband to turn to. So I don't have the experience to begin to know how you must feel. But I just wanted to say you have family friends and the forum and if there is anything I could ever do to help, I promise I will do my best, but although I don't know you very well I would be honoured if you and Worrals would both regard me as a friend,. willing to help if I can.Love Blue Angel x
Hi Vivian, It must be so hard for you too but in a different way. I am finding it very hard knowing what to say, I just wish it would all go away most days, but I have my husband to turn to. So I don't have the experience to begin to know how you must feel. But I just wanted to say you have family friends and the forum and if there is anything I could ever do to help, I promise I will do my best, but although I don't know you very well I would be honoured if you and Worrals would both regard me as a friend,. willing to help if I can.Love Blue Angel x
hallo Worrals,
I know just how you feel - my wife moved into nursing home about 2 months ago.
Her one wish is to come home but for several reasons this is simply impossible,
I visit almost every day and always feel guilty on leaving.
Really what we miss most is just not being together - tough after 65 years of happy married life - not to mention the 16 great-grandchildren.
In some ways it is almost as hard for us - having to cope with being on our own.
Somehow we have to find a new interest - easier said than done - what are your interests?
have you tried The Answerbank on the web? Good chat on the section called Chatterline - I am very new to this but find it very helpful.
I made a drastic decision today - decide to pack up driving this Saturday when the Insurance falls due! Do so little mileage and feel less confident - didn't want to be a nuisance. So that's something else I will have to learn to cope with.
Hope you soon feel happier - we are all here to help in any way so come and talk again.
Goodnight, God Bless
jackmin
I know just how you feel - my wife moved into nursing home about 2 months ago.
Her one wish is to come home but for several reasons this is simply impossible,
I visit almost every day and always feel guilty on leaving.
Really what we miss most is just not being together - tough after 65 years of happy married life - not to mention the 16 great-grandchildren.
In some ways it is almost as hard for us - having to cope with being on our own.
Somehow we have to find a new interest - easier said than done - what are your interests?
have you tried The Answerbank on the web? Good chat on the section called Chatterline - I am very new to this but find it very helpful.
I made a drastic decision today - decide to pack up driving this Saturday when the Insurance falls due! Do so little mileage and feel less confident - didn't want to be a nuisance. So that's something else I will have to learn to cope with.
Hope you soon feel happier - we are all here to help in any way so come and talk again.
Goodnight, God Bless
jackmin
An old neighbour of ours has PD and he had to move into residential care as they couldn't manage on their own. They have their own bungalow within a community with regular visits from a warden to check they are ok.
There is help whenever they need it but they still live together and have their independence when they can.
Is there anything like that you could look into near you?. Seems to me that is the best of both worlds.
Caroline.
There is help whenever they need it but they still live together and have their independence when they can.
Is there anything like that you could look into near you?. Seems to me that is the best of both worlds.
Caroline.
Thank you all for your support and suggestions.
The forum is so good for letting off steam!
Just to reassure you all, I am not sitting feeling miserable all the time. I am actually a glass half full person and have a full life - painting, gardening, dancing, WI. I am a National Trust volunteer, I have good friends and my daughter lives nearby with my grandsons (who I am entertaining for the Easter holidays as my daughter works!). I enjoy my life on the whole.
It is just that in the background there is always this sadness that I am no longer sharing my life with my husband and I wanted to express this and acknowledge the big part that he has played in my life.
Caroline: I have considered having my husband back home with carers coming to help but unfortunately his needs are very complex and he needs the 24 hour nursing care available in the home.
Today I am having a lazy day after cooking lunch for my family yesterday, and preparing for the Easter Hols. Will take my grandsons to see my husband tomorrow and then on to a farm where there are loads of small animals and an adventure playground!
So, once again to all of you, Vivian, Blue Angel, Jackmin, Caroline and anyone else who reads my post, thank you for being there and for your continuing friendship.
The forum is so good for letting off steam!
Just to reassure you all, I am not sitting feeling miserable all the time. I am actually a glass half full person and have a full life - painting, gardening, dancing, WI. I am a National Trust volunteer, I have good friends and my daughter lives nearby with my grandsons (who I am entertaining for the Easter holidays as my daughter works!). I enjoy my life on the whole.
It is just that in the background there is always this sadness that I am no longer sharing my life with my husband and I wanted to express this and acknowledge the big part that he has played in my life.
Caroline: I have considered having my husband back home with carers coming to help but unfortunately his needs are very complex and he needs the 24 hour nursing care available in the home.
Today I am having a lazy day after cooking lunch for my family yesterday, and preparing for the Easter Hols. Will take my grandsons to see my husband tomorrow and then on to a farm where there are loads of small animals and an adventure playground!
So, once again to all of you, Vivian, Blue Angel, Jackmin, Caroline and anyone else who reads my post, thank you for being there and for your continuing friendship.
GOOD MORNING ALL .
I have been reading your post with a lump in my throat . It would be much more difficult without the support of this site.
Although still able to care for my husband as you all know no easy task . it is always at the back of my mind that one day things might
change .
It's not somethinG that you can prepare yourself for but knowing you can be in touch with others who understand exactly is so comforting .Love to you all x
I have been reading your post with a lump in my throat . It would be much more difficult without the support of this site.
Although still able to care for my husband as you all know no easy task . it is always at the back of my mind that one day things might
change .
It's not somethinG that you can prepare yourself for but knowing you can be in touch with others who understand exactly is so comforting .Love to you all x
Hi Worrels
It was good to read your post regarding your dear husband who has had to go into care. My constant worry lately is that it will not be in the too far distant future that my husband may need this, it has already been suggested that we give respite a try. However, finding a good care home with people who understand PD is a worry, because as we all know it is a very complex condition and all sufferers are so different. However, I am pleased that you have found him a nice home where he is cared for properly.
Hi Vivienne
My heart goes out to you, as I have expressed to Worrels it is a worry, in case my husband will need to go into care in the near future. God Bless you both and I hope you can get some positive help soon with your dear husbands care
It was good to read your post regarding your dear husband who has had to go into care. My constant worry lately is that it will not be in the too far distant future that my husband may need this, it has already been suggested that we give respite a try. However, finding a good care home with people who understand PD is a worry, because as we all know it is a very complex condition and all sufferers are so different. However, I am pleased that you have found him a nice home where he is cared for properly.
Hi Vivienne
My heart goes out to you, as I have expressed to Worrels it is a worry, in case my husband will need to go into care in the near future. God Bless you both and I hope you can get some positive help soon with your dear husbands care
Hello Blue Angel and everyone,
Thank you for your posts I appreciate them so much, this condition throws so many different situations at you and as some of you may know I managed for almost thirty years and only had help for the last couple which went very quickly to 24 hour care which for the most part went well. We did have 80 carer's in two years which is a lot of change and it certainly did not give me the rest it was supposed to, but my husband had a very good two years doing lots of things he enjoyed.
Please don't worry too much that you will have to go into a home as many people manage it was just that I already had a chronic back condition and my lovely husband changed from a gentle placid person to a very challenging one and the consultant took the decision as I was at breaking point several times over.
I would have my husband back tomorrow but I know I can't manage him at present, the awful thing is I have to wait until he is even more poorly before I can move him just up the road from me and then I can make sure he gets looked after properly.
I too am a very strong and three quarters full person with many good friends and wonderful son but the sadness of not being with my husband is overwhelming sometimes it is something you just can't control or help. I am very thankful we have always been close and had a good marriage despite parky but we have been robbed of so much too.
For you all planning ahead and making sure you have all the help and adaptions, equipment and a sensible approach and looking five years ahead will help you to stay in your own home for longer, do not struggle too long on your own or struggle with pd too much before making adjustments and above all enjoy life while you can.
best wishes to you all.
vivian
Thank you for your posts I appreciate them so much, this condition throws so many different situations at you and as some of you may know I managed for almost thirty years and only had help for the last couple which went very quickly to 24 hour care which for the most part went well. We did have 80 carer's in two years which is a lot of change and it certainly did not give me the rest it was supposed to, but my husband had a very good two years doing lots of things he enjoyed.
Please don't worry too much that you will have to go into a home as many people manage it was just that I already had a chronic back condition and my lovely husband changed from a gentle placid person to a very challenging one and the consultant took the decision as I was at breaking point several times over.
I would have my husband back tomorrow but I know I can't manage him at present, the awful thing is I have to wait until he is even more poorly before I can move him just up the road from me and then I can make sure he gets looked after properly.
I too am a very strong and three quarters full person with many good friends and wonderful son but the sadness of not being with my husband is overwhelming sometimes it is something you just can't control or help. I am very thankful we have always been close and had a good marriage despite parky but we have been robbed of so much too.
For you all planning ahead and making sure you have all the help and adaptions, equipment and a sensible approach and looking five years ahead will help you to stay in your own home for longer, do not struggle too long on your own or struggle with pd too much before making adjustments and above all enjoy life while you can.
best wishes to you all.
vivian