Longing to be free.

[dancer12]

These are my rambling thoughts today.

@dancer12

My hubby is finally going to a daycare. His neuropsychiatrist told me not to expect any socializing to happen for him there. OH cannot even remember when he goes there, once are we get back into the car he has forgotten where he has been. OH is no long capable of much social interaction. But the daycare provides me a long stretch of time on my own to pursue my own direction...for 8 hours. OH has now stayed on his own two times at the center for the full day without me. He gives me a thoroughly dirty look when I leave him but he is staying and not causing any problems. I am so grateful for these lovely professional carers who take over. I keep taking steps to ensure that I have a happy life. My eldest son always says his family life is best when he follows this principle" happy wife, happy life". So, I apply his adage to my situation. I must take care of myself and find joy in my life or I have nothing left to give. I deserve to live my life and have joy. Over the years, there have been a few times when I let things get out of control and not having enough help. Those times have driven me to try and stay two steps ahead of this Alzheimer’s. My next goal is to meet up with the health carers who come and actually feed and dress him....my concern is on the days when I get ill myself and cannot take care of him. I want to have something in place for those occasional times. It is now 16 years into his progression in the "long goodbye...at some point, I will not be able to physically give him all he needs, but he is fit and healthy in body today...long may that last. So, I have a lovely day planned of walking, good food and general chores, a period of rest or kip in the afternoon, then this evening I have a Man sitter and I will go to my classical ensemble group to sing for a few hours. I am praying for a good day....just for today. Staying in the now and hoping that I can be patient and loving today....no idea what tomorrow will bring but for today I wish to be patient and then more patient.

Hi PalSal:

So glad your husband is sort of okay with staying at daycentre. My husband isn't. He just wouldn't go. I think seeing more advanced dementia patients really bothered him. Both his mother & uncle had it and he saw the advanced stages. I believe he is scared of what is going to happen to me & the kids (adults now - thank goodness, I don't know what I would do if they were still small). I am managing but I am terrified of what the future will bring. It is important to take care of yourself & do the things that you enjoy. For now he is still able to do things, as long as someone is with him, so I take him out to libraries, for walks, shopping & to coffee shops. At times he believes there is something wrong but most times he thinks there isn't and that makes it terribly difficult - my guilt maybe. His understanding is totally gone and his hearing is partially gone, therefore I have to repeat myself 10 times before he hears & understands and it drives me crazy. I had 4 hours on my own to go to a support group and it was like a big weight was lifted off my shoulders. Hoping to have more of these free hours in the future, I feel bad leaving him but I know that I have to do things I enjoy or I will never survive. Sometimes I wonder if he would do the same for me.

Take care of yourself, you have had a long & difficult time.
Sending many cyber hugs.

 

[Duggies-girl]

I did dads shopping a couple of days ago in the local Asda and decided to take half hour out on my own in their little cafe with a coffee. It was so nice, I didn't have to speak to anyone at all I just sat and drank my coffee in total peace. I may do it again tomorrow.

 

[Violetrose]

Hi Violetrose

I don't have any answers but I completely understand how you feel. I love my wife deeply and we have been together for nearly 50 years but the stress of trying to deal with this is so hard to cope with day to day and is unremitting and gets worse each day.Your feelings are truly understandable.
I don't have any help which may be something I need to address but my wife refuses for me to have anyone come into the house or visit anyone. Do you talk to anyone about your feelings outside the forum?

Thank you for your reply to my post and thank you for your kind words and understanding. There is comfort in knowing other people understand. I do talk to my daughter in Australia, but I am conscious that I am talking to her about her much loved Father and don't want to distress her. Other than this I don't discuss what is going on with family or friends, as I don't want them to know how he is. It seems somehow disloyal to talk about his problems. I try to see our life now as a horrible period in an otherwise happy life. At least I have been fortunate for most of my adult life to have had a happy and loving marriage. I am at the stage now of thinking we do need outside help. I don't think it will be popular with my husband, but something had give! Thank you again for responding to the post.

 

[Violetrose]

I did dads shopping a couple of days ago in the local Asda and decided to take half hour out on my own in their little cafe with a coffee. It was so nice, I didn't have to speak to anyone at all I just sat and drank my coffee in total peace. I may do it again tomorrow.

We don't ask for much do we? Just a little respite in peace and quiet. I hope you managed to do it again.

 

[Violetrose]

I saw that and loved it because so often we are beyond words and Talking.
You inadvertently expressed how many of us are feeling at some point.
So often I cope then a small thing sends me out of equilibrium.
Perhaps we should start a Tipping point thread sending an SOS when starting to tip.
When I start closing down it is a warning to me.
So what's stops us Tipping?
t the moment at 3.30 am. I am thankful I am warm, every thing is quiet, I can sleep a bit longer.

I guess for people on here referring to TP as Tipping Point is a kind of Freudian slip. I often feel I am at tipping point.

 

[Violetrose]

Dear Violetrose,
I see you like me are awake at this ungodly hour. I identify with all that you have said, we live our lives in limbo never knowing what comes next. When my husband was diagnosed it was only the confirmation of what I had known for about four years, He rapidly declined in the space of a year ending with him being sectioned. He is now entering the fourth year of care and I visit daily but the feelings of resentment are there.
My early retirement years have been taken up with his various illnesses and the role of wife became nurse then carer, the is just the two of us so who will care for me?
You said in your reply to Mickeyplum about the 'horrible feelings,' I have learnt to accept that we are only human and to see the life we thought we would have vanish and be thrown into situations that we could never have imagined.
Violetrose you are allowed to feel the way you do, be kind to yourself and at least on TP you are among friends who understand and offer support.
Look after yourself and know you are not alone.
Kathy x

Dear Kathy, thank you so much for your wise words and kind understanding. I am fortunate to have found this wonderful group. Xx

 

[PalSal]

Hi PalSal:

So glad your husband is sort of okay with staying at daycentre. My husband isn't. He just wouldn't go. I think seeing more advanced dementia patients really bothered him. Both his mother & uncle had it and he saw the advanced stages. I believe he is scared of what is going to happen to me & the kids (adults now - thank goodness, I don't know what I would do if they were still small). I am managing but I am terrified of what the future will bring. It is important to take care of yourself & do the things that you enjoy. For now he is still able to do things, as long as someone is with him, so I take him out to libraries, for walks, shopping & to coffee shops. At times he believes there is something wrong but most times he thinks there isn't and that makes it terribly difficult - my guilt maybe. His understanding is totally gone and his hearing is partially gone, therefore I have to repeat myself 10 times before he hears & understands and it drives me crazy. I had 4 hours on my own to go to a support group and it was like a big weight was lifted off my shoulders. Hoping to have more of these free hours in the future, I feel bad leaving him but I know that I have to do things I enjoy or I will never survive. Sometimes I wonder if he would do the same for me.

Take care of yourself, you have had a long & difficult time.
Sending many cyber hugs.

Hi @dancer12
Yes, I had to wait years and years before he would agree to go. He is now 65. ....and a little closer in age to the group but still far and away the youngest there. I think the next guy is like 78 or something.

 

[dancer12]

Hi @dancer12
Yes, I had to wait years and years before he would agree to go. He is now 65. ....and a little closer in age to the group but still far and away the youngest there. I think the next guy is like 78 or something.

Hi:

It's so sad when dementia is diagnosed but especially sad when they are so young. At least he is still fit & able to do a lot of walking. I feel for you. Many hugs coming your way.

 

[Violetrose]

I posted something very similar a few days ago. I love dad to bits but I’m ready for the end now. I want my life back. I’m done with dementia. It’s robbed dad of everything he’s got and it’s robbing me of my life. I’m not entirely sure how I manage my feelings. I do try and eat healthily and get some fresh air every day and I find it helps. Sometimes a walk in an open space can help put your thoughts in order. I find I can almost cast my feelings away into the great big outdoor space around me and although my problem hasn’t gone away, it seems smaller somehow. This probably sounds completely random and bonkers but I hope I’ve explained it well enough to see how it could be a help?

Oh I know that feeling! I would love to be able to walk in the hills. Being outdoors in a beautiful place restores you somehow. I am going to try to get outside more, even if it round the local park. Thank you.xx