It is the not knowing how long and not being able to plan anything. My OH was diagnosed in June 2016 but had it from 2012, I can remember the mood swings then but not as bad as now! Today he has been nice and thanked me for a nice day. The last 5 weeks he has been a nightmare really nasty, blaming me for everything!
Longing to be free.
- Thread starter Violetrose
- Start date
Hello Violetrose - thank you for expressing so bravely exactly how I feel. I've often wanted to post something similar, but just haven't been able to find the words. I know I will find comfort from the replies posted to this thread. So once again thank you. I send you the only thing that I can - the biggest, biggest hug. Mx
Dear Mary, thank you for your reply. There is comfort in knowing that other people struggle with the same issues. several people have made very practical solutions about getting to grips with the feelings and lots of kind and caring folk have sent love and best wishes. What a wonderful caring and supportive community this is. Thank you for the hug, much needed and appreciated. Xx
Dear Guzelle, thank you for replying to my post. You are right that not knowing how long and not being a able to plan anything makes things much more difficult. That sense of your life as well as your OHs being consumed buy this awful disease is so difficult. However, there is comfort in knowing others share the same feelings and TP is a wonderful community who offer so much comfort and support.
Dear Geraldine, thank you for replying to my post. Your understanding and reassurance is a great comfort. Xx
Dear Jean, thank for your reply to my post. I take great comfort from knowing I am not alone in my mixed feelings and worries. Your post does give me heart that things can improve and sometimes we have to stand down and let other provide some care. Xx
Dear Mickeyplum, thank you for your kind words and understanding. There is comfort in knowing others have the horrible feelings and uncertainties. TP is a wonderful community. Xxx
Thank you for your reply to my post and for your understanding and kindness. Thank God for TP members, what wonderful, clever, kind and supportive people.
Dear Maryjoan, thank you for your response. It is reassuring to know others have the same mixed feelings and ambiguities about their situation. Xx
Dear Dancer, thank you for your understanding and for your sound advice. I need to do as you say and make arrangements for some kind of break from the disdain. S you say even a few hours would make a difference. XxHi Violetrose:
Would he agree to maybe going to an adult day care centre, mine didn't like it .He could socialize & you could have some free time for yourself. WIN/WIN. Here they give caregivers an amount of caregiver hours to go out by yourself and re-group. It does wonders. Last week I took 4 hours to go to my support group, was totally refreshed. I came back & 5 minutes with my husband I needed more. But any time on your own DOES HELP. You might need to hire someone for your own sanity.Any free time is a bonus.
Dear Duggies Girl. Thank you for your reply. I take comfort in knowing others haves the same feelings. Thank you also for your good advice. Xx
Dear Friend, thank you for responding to my post. Thank you for being honest and straightforward in your reply. There is comfort in knowing others share all the issues related to caring for someone with Dementia. Please don't feel your life has no value, nothing could be further from the truth. What you do for your husband is truly amazing and I know from looking at TP you offer so much support to people on this forum. All I can do is send you live and a virtual hug. Xxx
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
For those that didn't see this when I posted it nearly 2 years ago there's an incredible R4 Woman's Hour clip on sex, love and caring for a partner with dementia.
Sue, the interviewee, is incredibly brave in her honesty, aware, open and clear - it's ground breaking radio and to be recommended.
Some of you will know that I am highly critical of what I call 'dementia puff pieces', this piece is a long way from that.
Sue, the interviewee, is incredibly brave in her honesty, aware, open and clear - it's ground breaking radio and to be recommended.
Some of you will know that I am highly critical of what I call 'dementia puff pieces', this piece is a long way from that.
Talking to myself I know.
I can stress if I look to far forward, today has enough problems of its own.
I try not to over dwell in the past, I cannot get it back.
I do try and get an overall view of my and of our lives.
It is too easy to feel emptied, no more to give, inadequate at what not achieving.
Just running on empty, but still having to run. Then run some more.
It is so exhausting, it is easy to feel devoid of feelings.
It is tempting to beat oneself up.
Looking back at achievements small and great reminds me of who I really am, of who he is and of who we both are. This helps to ground me, to feel supported.
Once I warned a friend I was supporting through a difficult divorce that problems remain in number they are just different.
We laughed when she ruefully came back to say she had found this to be more true than she realised.
When I tell myself that, it helps shift my perspective to the present situation.
Sometimes the only control we have is shifting our perspective. It gives a mental sense of freedom if not freedom it self.
Freedom for me is very elusive. Perhaps freedom is feeling just being in control, a shifting of the gears of expectation.
Planning, and I am a planner, is an occupation that gives me a sense of control. Then Life throws up something completely different. The Universe is laughing, I remind myself---- it will not matter in a 100 years.
And so to start another day..............
I can stress if I look to far forward, today has enough problems of its own.
I try not to over dwell in the past, I cannot get it back.
I do try and get an overall view of my and of our lives.
It is too easy to feel emptied, no more to give, inadequate at what not achieving.
Just running on empty, but still having to run. Then run some more.
It is so exhausting, it is easy to feel devoid of feelings.
It is tempting to beat oneself up.
Looking back at achievements small and great reminds me of who I really am, of who he is and of who we both are. This helps to ground me, to feel supported.
Once I warned a friend I was supporting through a difficult divorce that problems remain in number they are just different.
We laughed when she ruefully came back to say she had found this to be more true than she realised.
When I tell myself that, it helps shift my perspective to the present situation.
Sometimes the only control we have is shifting our perspective. It gives a mental sense of freedom if not freedom it self.
Freedom for me is very elusive. Perhaps freedom is feeling just being in control, a shifting of the gears of expectation.
Planning, and I am a planner, is an occupation that gives me a sense of control. Then Life throws up something completely different. The Universe is laughing, I remind myself---- it will not matter in a 100 years.
And so to start another day..............
These are my rambling thoughts today.Hi Violetrose:
Would he agree to maybe going to an adult day care centre, mine didn't like it .He could socialize & you could have some free time for yourself. WIN/WIN. Here they give caregivers an amount of caregiver hours to go out by yourself and re-group. It does wonders. Last week I took 4 hours to go to my support group, was totally refreshed. I came back & 5 minutes with my husband I needed more. But any time on your own DOES HELP. You might need to hire someone for your own sanity.
@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.
This sounds like a good plan, enough self care is the key.
I am in the process of trying to arrange more help. There is a day centre that would give me from 10 until 2.00
Cleaners are like gold dust if I want convenient hours. Being in a rural area brings advantages but also transport problems. It is a juggling game. Keep in touch with how it goes for you. Xxx
I haven’t listened to this yet but I think I understand what it is going to say. Yesterday I had lunch with my daughter and we were discussing the breakup of a family marriage, mainly because of loss of sexual attraction of one of the partners for the other. I was able to tell her that I feel the same after a very happy marriage of 53 years. Now in this 54th year it is completely different and I have only platonic feelings for my dear husband. My daughter was extremely understanding and had thought of this factor in our situation so that was quite consoling.
