Home alone

[Grannie G]

I am sure I will get used to my new life, given time.
Jan x

I am getting used to my life Jan , after two years, but it is far from perfect and definitely not what I`d choose.

I think we have to be realistic and weigh up the pros and cons.

Opting for residential care is the most difficult decision anyone has to make, but it is necessary if we want to safeguard our own health and the health of the person we care for. However painful, we need to face the fact a lone carer, even with help, cannot provide the level of care a good home, with a team of carers, can.

I remember taking my mother to her residential home. I said I hoped she`d be happy there. With a flash of insight she replied, `I`m not looking for happiness but I know I have to go.`

 

[jan.s]

Thanks Sylvia, it's certainly not what we had planned but life is like that! Your continued support is much appreciated. Jx

 

[BungleGirl]

Hi Jan,

Sending you hugs at this difficult time. It sounds as though your husband is settling in well. You mentioned your dog - have you asked if you can take him/her with you when you visit? The care home that Mum was at had a dog and there was also a lady who took her little dog every day to visit her husband and he used to leap up on the bed and snuggle up with his owner. That little dog really cheered me up!

xxx

 

[Butter]

I am so pleased your visit yesterday was better than it might have been. Of course I hope for the same again for you today.
Butter

 

[karanja]

Jan,I know exactly how you feel.After looking after my wife at home,A,65 with vascular dementia,for around a year with things getting progressively worse.She went into respite care for the first time on 12/03 and on 14/03 a decision was made by our Social Services Care Manager and our GP after conversations with the home that she was unfit to be living at home under my care.

Its been 5 weeks now and I'm still struggling to being home alone, except for the cat.It was a 24/7 job looking after A but at least she was here and I could help her.
Helplessness is the word for how I feel as the care home,whom I have no complaints with,now do everything.

I'm even finding going to visit her difficult at times.It's the uncertainty of what she is going to be like that gets to me.When she was at home at least I could see what was going on at all times.

I'll finish now as don't want to go on too but just wanted to let you know that someone else feels as you do.Take care.

 

[Jo1958]

Jan, hi
I do so hope that your day was better today and you have had a good and happy visit, oh it's so very hard my heart goes out to you both.

karanja, hello and welcome to Talking Point
What a trial you are going through, I hope that your visit get better and you can settle into a good routine and enjoy good times again without the constant care and worry, please keep in touch.

I am only a few days/weeks behind you on this journey although I'm still busy with hospital visiting I am busy with the other plans that go along with caring for a partner with the terrible disease.

Take good care and know that there is support on here for us all, with best wishes from Jo

 

[jan.s]

I am amazed at the amount of support I have received and can only say a huge "Thank You" to everyone. I have found the past few days a big struggle and and have so wanted to turn back the clocks, but know that I can't. My other option was to run away, but that didn't seem like a good choice either, so I stayed put and faced up to my new life.

Thankfully, R has started to settle in the CH, but it makes me so sad to see him among people who are a good 20 years older than him, but he does fit in most ways. He has shown some signs of agitation over the weekend, but is becoming calmer and knows that I will continue to see him everyday. I must say, the staff are lovely with him and he feels very comfortable - some of them have a joke with him and others his face beams when he sees them. One old lady has made a beeline for him and was kissing him this afternoon while I was talking to him - he won't stand that for long!!! I don't think I have competition though.

All I hope is that he is happy, as I can cope with my life.

Karanja, I do understand - you have put into words exactly how I feel, and your experiences are the same. I am making sure though that I play an active role in his care within the CH, I stay and help him with dinner or something similar. It is important to me that we maintain that relationship and he knows that I am there for him and that he can still trust me. I want our time together to be good times. When I turned up today he said "Oh it's you" with a big smile, and moments like that are treasures.

Thank you too to Jo, Butter and Bunglegirl. I can take the dog there and probably will do when the weather is better. It may well be a one off experience though as he's not the best behaved, totally spoilt at home.

Thank you all. I will keep you posted on how things are going. I think my shock came initially as I realised it is final - even though I know I cannot care for him at home and the home has such a brilliant reputation.

Love Jan x

 

[Helen33]

Dear jan,
It was lovely to read your update. Alan lost the ability to recognise age difference so it didnt pose a problem to him as it did to me to start with. I was more worried about the young age of the sitters coming in to care for him. I think it's wonderful that you have been able to decide the role you want in this new situation. Don't forget yourself though and pethaps think just a little about beginning to build up a little life for yourself as this can be a valuable investment for later on.
Love

 

[jan.s]

Helen thank you so much for your lovely reply. I am trying hard, although it's not easy. The CH does have a day care centre which he can go to, where there tend to be younger people too, and I would like to try to get him involved in some activities if he will.
I did start to do things for myself when he was in the assessment unit, and will try to continue with them.
Thank you again.
Jan x

 

[marisarose]

one day at a time

Jan, you are allowed not to be strong all the time. If you feel like crying, shouting, punching pillows etc. then go ahead!! It is so good that your dear husband is settling in okay at the CH - that is such a blessing although I know it doesn't help your feelings of loneliness. I would just say, take each minute, hour, day at a time - try not to look too far ahead, none of us know the future so there is no point in worrying about it. It will take time for you to get used to being on your own, of course it will - but at least you know he is being well looked after. You have to look after you now, you still have your life to live and your husband wouldn't want you to be unhappy, it seems like he is 'leaving the room' all the time but still there in body, which I know is a strange thing to get used to, but just enjoy those times when he knows you are there and knows who you are - those times are so precious. He is so very young to be struck down with this awful disease, I can't imagine how you must feel. My experience is different, my dear Mum had vascular dementia which latterly verged on alzeimers but she luckily always recognised me and my sisters. She went through a shocking time of it but because her memory was so short at least she would forget the awful times (but of course would also forget the good times). It is heartbreaking but you will be given the strength you need to cope. My thoughts and prayers are with you and your dear husband. Chin up Jan!
Linda

 

[upton218]

Home alone.

Hi Jan,

I had the same problem of feeling guilty and still do to a certain extent. My wife went into a care home on the 31st of January,as I was unable to cope with the night disturbance. This had gradually increased over the previous three years together with double inc.

Tony.

 

[jan.s]

Hi Linda
Thank you for your positive vibes. You're right, I try to focus one day at a time. Life is getting easier as it is such a pleasure to see my husband looking so happy and relaxed - what a relief. We have an excellent relationship, whereby he trusts me to do the right thing for him, which is brilliant. I have got to start looking at my life, but don't feel ready just yet; given time, I will.

Hi Tony
I too struggled with my husband at home, as he was quite difficult with me. I did feel a huge sense of guilt at one time, but I now realise that it is for the best and we can enjoy a good and loving relationship without all the aggro!

I miss him terribly, but am sure this is the right thing.

Thank you all again.

Jan xx

 

[Aasha]

Dorothy

Hello Jan , I too am going through the same as you only my husband is 72 but a very young 72 , it is a very cruel illness that robs us of our loved ones . we have been married 47yrs and I feel so lost without him , it is now 3 45 and I am up not being able to sleep , I cried to when I read your story , I know exactly how you feel and my heart goes out to you . Try to be strong the husband you love is still there and if he is happy that is a blessing , thinking of you and hope you will be ok . It is ok to cry ,

 

[Izzy]

Thinking of you Dorothy. It is so sad. Hope you get some sleep. X

 

[father ted]

Hello Jan,

Have not logged on for a while and your message caught my eye. Anyone that has to care physically and emotionally for someone they love will understand exactly how you feel. When you care for someone around the clock you can lose yourself because you are always putting another needs first not out of duty but love and do so willingly.
When we no longer have these duties you can lose your sense of purpose as well as feeling so terribly guilty because you feel you have deserted them when they needed you most but DON'T ! It sounds like you are a very loving couple with a very happy marriage and I deliberately use the present tense because that has not changed only your circumstances and we are all at the mercy of things out of our control.

Take everything in your stride, share your feelings as often as you have to, visit your husband when you feel the need to be close. The lonely feelings are natural and you will work through those (many people are lonely in unhappy marriages), sadness too none of us are immune to but don't feel guilty. Look after yourself so you are there for your husband even if it is at a distance. Father Ted X

 

[Grannie G]

Life is getting easier as it is such a pleasure to see my husband looking so happy and relaxed - what a relief.

I`m so pleased for you Jan.

I too struggled with my husband at home, as he was quite difficult with me.
I miss him terribly, but am sure this is the right thing.

And here again I can identify with you so much. xx

 

[sport123]

Hi Jan

I also have not logged on recently, but saw your message and needed to respond. My husband has also just gone into respite, which I believe will be a permanent stay. He is young too 64, but of course age doesn"t matter. I miss him so much, and feel very lonely. I know it is for the best, as everyone says, as I was finding it very difficult to cope in so many ways and in fact last Tuesday, everything got so much worse and I needed to call the paramedics. I have visited him today, and he looks less worried, maybe I should have seen the signs earlier, but as you know, I was in denial and did not want to make that next big step. I too want him to feel safe, content and happy as possible. Guilt will be with me always I know, I feel I failed - everyone says I shouldn't, but how do you stop. He has had Parkinsons for over 24 years, and dementia since 2008, which has progressed rapidly. I have been his carer and feel so very responsible for everything. I think of you often, and all that you said could have been me. It is true we are not alone on this journey, and send you all my warmth and support, I think we will get used to being 'home alone', so well said but very hard I know. Denise x

 

[imp]

Hello Jan, I went through the same feelings two years ago when my husband of 61 years left to go into a nursing home. since then I have grappled with many feelings and like you I just want him home again, however that is not to be and my heart goes out to you. I shall think of you and hope that you will soon feel a little better. We have now celebrated another two wedding anniversaries together even if it is not how it should be. This is the most evil disease and I hope that it will give you a,little comfort to know that you are not alone in this situation and that we are all wishing you well. Iris

 

[anxious]

Hi Jan

I felt so sad when I read your post. My Husband went into a dementia hospital Feb 2011 then after spending 8months there,he went into an EMI home.I miss him every day, and cried continuously for several months.I still feel guilty that he is living in a home,even though it is the best place for him to be. I am 71 and have never lived on my own, the adjustment takes a long time, some days are better than others. I pray that things get easier for you, knowing that your lovely Husband is being well cared for.Love Glynys

 

[jan.s]

I am so thankful that I found TP - better late than never! I am so grateful for all the lovely messages of support, and the understanding that has come from the posts. I cannot thank you all enough, it is such a support to know I'm not alone.

I am trying so hard to be positive, but it doesn't always work, but I will keep trying as I have no choice. As I have said before, my task is made easier because he is happy. I think he thinks he's staying in a hotel!

I spent his morning naming more clothes!! I want him to look smart, so have bought new things for him, that will withstand the rigours of care home washing, although that cannot come close to the hospital laundry - all his clothes are stiff as a board and had to be thrown. He came out with few of his own clothes anyway!!

It makes me tearful just knowing how much people care, and even though we've never met, I regard you as my friends. I thank you all from the bottom of my heart for your words of advice and kindness.

I hope those of you who are in a similar position to myself, can feel strong and come to terms with the enforced separation.

LOve Jan x