Dementia’s journey

[Dutchman]

Reading our posts it’s clear that our shared home can be a form of sanctuary being filled with all those things that meant, and still mean, so much to each other. It can also be a form of upset when looking at things reminding us of shared times. There’s no real release from this mixture of emotions.

I’m driving to view a cycle and I’ve just parked up in a lay-by. Driving always brings awful memories of taking Bridget to cafes when she was in her last days with me ( no washing, changing clothes, no recognition of me) and I get upset enough to need to pull over and park.

So here I am? and I’m consumed by regrets and guilt once again. All my shouting, bad mouthing, short temper when she was with me and I constantly feel it contributed to her needing to leave me and our lovely home.

Why can’t I convince myself otherwise. It’s a desperate need to apportion blame somewhere to make sense of all this. I’m seeing her later today and then return home to what was supposed a lovely home for the rest of our lives.

Together in sadness and grief. Love to you all. Peter

 

[Old Flopsy]

Hi @Dutchman Yes the home is a constant reminder of who is missing. The empty chair where OH once sat,

We have probably all done the shouting, short temper, etc and we have to let that go. I doubt if my OH remembers me 'losing it', but I can't forget.

I hope your visit goes well, but if it doesn't we are all here for you.And the next visit might be better- that's what I keep telling myself.

 

[Pusskins]

Reading our posts it’s clear that our shared home can be a form of sanctuary being filled with all those things that meant, and still mean, so much to each other. It can also be a form of upset when looking at things reminding us of shared times. There’s no real release from this mixture of emotions.

I’m driving to view a cycle and I’ve just parked up in a lay-by. Driving always brings awful memories of taking Bridget to cafes when she was in her last days with me ( no washing, changing clothes, no recognition of me) and I get upset enough to need to pull over and park.

So here I am? and I’m consumed by regrets and guilt once again. All my shouting, bad mouthing, short temper when she was with me and I constantly feel it contributed to her needing to leave me and our lovely home.

Why can’t I convince myself otherwise. It’s a desperate need to apportion blame somewhere to make sense of all this. I’m seeing her later today and then return home to what was supposed a lovely home for the rest of our lives.

Together in sadness and grief. Love to you all. Peter

@Dutchman I’m consumed by regrets and guilt once again, your words. These feelings never leave me. I know I'm supposed to be able to get beyond all this, but so far, I'm not making much progress.

 

[Dutchman]

Well, this morning is the morning I go inside the home to see Bridget for the first time since Christmas. I’m dreading it and expect to be totally upset by it all. I’m the first visitor to attend

My poor love looks vacant most of the time and who knows who she’ll think I am dressed in PPE. I hope the staff will be there quickly to take over if it all goes wrong .

Peter

 

[Grannie G]

Good luck @Dutchman

 

[Old Flopsy]

@Dutchman I'm sure we will be with you in spirit. Take care.

 

[Izzy]

I hope your visit is a positive one @Dutchman.

 

[None the Wiser]

Thinking of you @Dutchman. Isn’t it odd how we long to see them, but dread the encounter as we don’t know what it will bring.
I had a heartbreaking weekend as my husband fell in the home and bumped his head. He ended up in A &E and was kept in overnight. I had no contact with the hospital who would only liaise with the care home! With Covid restrictions you don’t feel you can rush over and ‘get in the way’.
I had a completely sleepless night worrying about him in hospital all by himself, not knowing where he was or able to do anything for himself, and probably highly agitated etc. When he was discharged on Sunday the home told me that he had had a Carer from the home with him the whole time! This was wonderful, but I do wish someone had said something earlier. Throughout this I felt totally helpless and stripped of my role as wife. This isn’t a criticism of the people involved. Needless to say I’m exhausted today, and without seeing him I don’t really know how he is.It doesn’t seem to be any easier now that my husband is in a home. The burden of day to day care has been lifted, but the emotional rollercoaster remains.
I’m going to go for a walk to try and get rid of the ‘gloomies‘.
Love to you all.

 

[Old Flopsy]

@None the Wiser I am on that emotional rollercoaster with you!

My OH also had a fall in the home the previous weekend and they rang to say they were waiting for the ambulance. But my OH went to hospital alone- which I found so hard to hear. They thought he would be returned to the home that day but waiting around in A & E meant he had to stay overnight to be scanned the next day. The nurse let OH ring me from the ward- but he just wanted me to go and give him a lift home- he denied having a fall and said 'that's all lies'. I was in bits- unable to do anything to alleviate his distress. I was unable to rest till the next day when the care home rang to say he was safely back with them and the scan was clear.

It's a constant worry even though we are no longer hands on caring and 'stripped of my role as wife'. I dread the phone ringing.

Hopefully it is of some comfort (probably not the right word) to know that we tread this path together- only those who do can understand our anguish. Take care.

 

[Dutchman]

I’m so sorry that you both had awful times with your love one being in the hospital. Bridget had a fall a little while back and I stayed with her while the hospital seemed to take forever to get things sorted. All very stressful.

Just come back from the home and my first visit inside and together in her room. I’m running it all through my mind now and it’s all very sad. We sit on the bed and I talk about anything and nothing to her but I’m not sure if anything means much to her now. She smiles at me, sees my face for an instant when I pull my mask down and then puts her head on the pillow and shuts her eyes. I’m there for about 20 mins. But I manage to brush her teeth so that’s something. She’s very compliant now.

It’s intensified the feeling of aloneness here at home ( I suspected it would) and I’m miserable. I’ve booked another visit for Thursday but I’m feeling that it’s not going to get any easier.
I waiting on a callback from an Admiral Nurse who might be able to talk and make me feel better
Peter

 

[None the Wiser]

@Old Flopsy Im so sorry that you’re going through similar difficulties, but must admit that it is comforting to know that you really do understand. At least you can still speak to your husband on the phone even if he doesn’t really understand!
@Dutchman I pictured you sitting with your wife on the bed. I know exactly how it was for you. Whenever anyone asks me how things are I use the phrase ‘it’s all very sad’ as you have. You feel ‘empty’ and ‘full up’ at the same time. I hope your call with the Admiralty nurse is of some help and comfort.
Thinking of you both.

 

[Dutchman]

Thank you @None the Wiser for your quick reply

❤️Peter

 

[Peace lily]

Dear @None the Wiser, @Dutchman and @Old Flopsy , I hear every word you say and feel the same deep sense of loss and grief. The turmoil, the neverending feelings of worry and anxiety, the desperate desire for it all to have been a bad dream and the realisation on waking, that the nightmare is so very real.
My dad went into a nursing home in February after he had a fall at home and social services would not discharge him unless he lived downstairs and had carers 4x.daily. My mum, who was already burnt out decided that it would be on my dad's best interest to be transferred to a nursing home for initially six weeks. I cried, I pleaded with my mum to let dad return back home to 'see how it went?'
Dad went to a home after 10 days in hospital. Four days later, he was readmitted to hospital with a chest infection. He returned back to the home six days later. Since then he has been back in hospital with a bout of pneumonia. On a positive note, dad settled really well, seeming to enjoy the company and activities. I saw him initially in a visiting pod, but it broke my heart. I felt helpless seeing him behind a screen. I have able to go inside to see my dad 3 times last week. The home is nice, the staff seem lovely, but I feel dreadful. He still knows who I am and isn't upset, but I leave each time and son. I feel so sad. It's affecting my sleep and I'm not eating properly. Everytime my phone rings I think it's the home telling me something bad has happened. It's been over three months now and it hasn't got any easier. Love to you all x

 

[Peace lily]

I forgot to say. My dad is now a permanent resident in the nursing home. It's impacting on both me and my mum. My mum and dad will have been married for 61 years in June. She has never been on her own since they married when she was 18. The void is unbearable. Alzheimer's has torn so many families/lives apart x

 

[kindred]

I forgot to say. My dad is now a permanent resident in the nursing home. It's impacting on both me and my mum. My mum and dad will have been married for 61 years in June. She has never been on her own since they married when she was 18. The void is unbearable. Alzheimer's has torn so many families/lives apart x

Peace Lily. I know, Alzheimer’s has torn so many families and left them with anguish like yours. There is some consolation in that your dad is settled. I know, the void is terrible, I lost my husband of fifty years to Alzheimer’s, we met as students at Uni and had been together since then. It can become impossible for the loved one to live at home and it is possible to maintain a loving and good relationship with them in a nursing home. But it is a terrible shock, and this is how you are feeling, all my sympathy, I am so sorry.
Warmest, kindred

 

[Peace lily]

Thank you for your kind words @kindred x

 

[Old Flopsy]

@Dutchman I was pleased to read that your visit was sad- it is an endless worry as to how our loved ones will be when we visit. I do hope Thursdays visit is OK. Did you get a call from Admiral?

@peacelily - I have much sympathy for you- three months on and it remains so painful to visit your Dad. I am pleased that he has settled although we continue to stress over the decision we have made and wish so much that we could wake up from this 'bad dream'. I do hope your Mum is coping with the emptiness of life without her lifelong partner next to her at home.

@None the Wiser My husband spoke to me on the hospital phone after his fall - it was lovely to hear his voice but upsetting too. When I visited him last week I took his mobile phone in for him- but he is unable to operate it without help. His mobile rang me in the middle of last night- what a shock- but all I could hear was a rustling sound so maybe he had it in bed with him. So it's more of a worry than a help!

 

[Dutchman]

The call from the Admiral Nurse cheered me a little. She was pleased that I felt the home is loving and caring for Bridget well.
It’s just the way Bridget is now I suppose that upsets me so. The vacancy in her face, the odd word only, never looking at me directly any more, as if in the distance there is something holding her attention. Sleeping more now and very easily distracted. The nurse said that I should only go inside maybe once a week if I find it too upsetting. I think that’s wise.

Its never ending is it! And now my daughter wonders why during the visit I felt “awkward “. I shouldn’t need to explain, it should be plain to know. I just feel people expect me to be “over it” or at least not be so affected by the situation. I’m tired of explaining to people who haven’t got much of a clue.

 

[Pusskins]

The call from the Admiral Nurse cheered me a little. She was pleased that I felt the home is loving and caring for Bridget well.
It’s just the way Bridget is now I suppose that upsets me so. The vacancy in her face, the odd word only, never looking at me directly any more, as if in the distance there is something holding her attention. Sleeping more now and very easily distracted. The nurse said that I should only go inside maybe once a week if I find it too upsetting. I think that’s wise.

Its never ending is it! And now my daughter wonders why during the visit I felt “awkward “. I shouldn’t need to explain, it should be plain to know. I just feel people expect me to be “over it” or at least not be so affected by the situation. I’m tired of explaining to people who haven’t got much of a clue.

So sorry @Dutchman for your eternal grief. It's an utter nightmare that nobody else understands. I think it's bad enough if you see a parent suffering, but a million times worse for the spouse to watch a dearly beloved partner slowly being taken from them. I am in constant turmoil myself. (((Hugs)))

 

[Dutchman]

I really don’t know what to do apart from writing here where everyone knows what it’s like. I’m desperately unhappy and the inside visit has upset me a lot. To be with Bridget alone with her in her room has brought home to me what a waste it is that she just sits there looking vaguely somewhere unable to say anything and no communication or companionship.

I’m suppose to go again this Thursday but I really don’t know if I should. Then again I feel a betrayal if I don’t as I should be more stronger and face it. The visit has made the lonely dreams start again and I woke up at 04.00 thinking of my loss.
I just wanted to say all this to you as very few “get it” and and appreciate how miserable this all is.
Peter