Dementia’s journey

[None the Wiser]

I do hope that Poppy brings you some joy @Dutchman. I’m sure she will.
I’ve now been told I can only visit my husband once a week as there aren’t enough slots for everyone! Despite the visits being really difficult and heartbreaking I look forward to them in an odd sort of way and now feel devastated that I can only go once a week. The visits are my way of checking to make sure he is alright. One of my brothers can’t understand why it bothers me as my husband doesn’t know who I am. Logically I can see his point, but emotionally it’s very hard. We seem to be inhabiting some kind of twilight world. None of it makes any sense. The small amount of relationship that we had left is now being diminished by these draconian restrictions. How do we learn to live in this ‘twilight’ zone?

 

[Dutchman]

Hello @None the Wiser. The misunderstanding of others beggars belief sometimes! of course it bothers you as it bothers me. I’m off to see Bridget soon and, although she doesn’t know “ me” I still crave a connection with her. Logic doesn’t come into it when we’re dealing with such great emotion.

Do not feel that you’re doing or feeling something wrong when you want that ongoing connection with your husband. Only when your brother faces similar emotions will he begin to understand.
peter

 

[Dutchman]

I’ve written back to Andy but @Pusskins @None the Wiser how are you? I’d just wanted to share my experience this morning which only us will feel the intimacy of its moments and relate to in grief.

Hi Andy. Good to have you to talk to.
I’ve just come back from seeing Bridget in her room and a little walk around the grounds. I’m very upset by it all. So much so I’ve asked the Dementia Nurse to call me back later ( they are wonderful ….through Dementia UK).
Me and Bridget sat on the bed and we listened to a couple her favourite songs. Seemed to connect.

We went back to her room after the walk and she immediately got on the bed as if to lie down and said “ you too”. I’m blown away by this apparent level of need by her and I struggle to hold it in and part of me wants to stay like this forever and another part can’t handle it and I want to go. Eventually we go back downstairs and I leave throughly fed up and cry in the car.

Andy, we do all this on our own with no support from others and it’s just too much sometimes and I just need someone to comfort me and understand my emotions. I think I’m entitled to any and every emotion that this agony brings and so are you. No one can criticise me for doing the best I can do in the circumstances.
Stay strong, stay in touch, God bless everyone.
Peter

 

[Dutchman]

Good morning everyone. It’s raining, covering the windows, sort of matches my mood. My new cat is getting bolder and sat with me last night while I watch a stupid time filler film.

I’m aware that in places and at times I might make mistakes in my different posts to you that are clumsy and could upset. For that I apologise.

Yesterday’s visit to see Bridget is definitely now forgotten by her and whatever heartache I showed equally forgotten. For that I’m content. I long for love from her but don’t want her to be upset by remembering me so I’m in the middle of this dilemma all the time.

I’ve another inside visit booked for next Monday and I’ll go for a window visit tomorrow. No one could expect more of me.

Bless you. Peter

 

[Old Flopsy]

Hi @Dutchman Yes nobody could not expect more of you- the number of times you visit puts me to shame, but I just can't face going more often. I get so stressed out preparing for the visit and OH has nothing to say, so it is so upsetting when I think back to how chatty and jokey he used to be.

I am so pleased that Poppy is already seeking your company- cats are amazing. I hope you will gain comfort from her presence.

 

[Dutchman]

Thank you so much @Old Flopsy. This business about visiting, well, the thing is that if I don’t go as often as I do then I get uncomfortable with thoughts of abandonment and guilt. Yes, I know that Bridget isn’t going to remember any visit and I’m advised to not overdo it, but for me it’s a balance of loving duty against uncomfortable feeling when I don’t go. Awful isn’t it!

If there’s one thing I’ve discovered it’s that none of us are alike in our feelings and we go with our emotions at the time. I’m all for what gets us through the day as easily as possible

Peter❤️?

 

[Dutchman]

Oh dear! Another knock sideways with my emotions, guilt, guilt.

My daughter visited today and told me of her neighbour who’s husband is in a care home. I go to visit Bridget 3/4 times a week and then come home to an empty house. This lady, before lockdown, didn’t just visit, she considered the care home somewhere where she’d stay all day with her husband ( breakfast, dinner and tea). So her empty house is just somewhere to rest her head. Her life is her husband no matter where he is. What she dealt with at home with him she continued and will continue with inside the care home.

You can see the logic. And does that reflect on me not wanting to do the same? Is there a selfishness in not wanting to spend all day in Bridget’s home? It would the ultimate act of love, to sacrifice my independence at home for being with Bridget all the time
( apart from bedtimes).
I mean, I’m always going on about how much I miss her, so logically wouldn’t that be the answer? Has anyone considered this as an option or not?
I wish my daughter had never told me!

peter

 

[Old Flopsy]

@Dutchman Well I just don't think this would be possible since Covid! I have to book a slot to visit, then I have a Covid test outside the care home, then wait in my car for half an hour till they ring me to say it's negative, then I am only allowed into the visitors room- no other rooms-and OH is wheeled in for 30 mins, then I have to leave.

I don't think your daughter has helped by telling you of that lady- I can't see many homes wanting a relative to be there for every mealtime (did they have to provide meals for her? That seems a bit too much to expect!).

I think you are already going above and beyond what most people would expect to do. Please don't feel you are being selfish because you are not.

 

[kindred]

Oh dear! Another knock sideways with my emotions, guilt, guilt.

My daughter visited today and told me of her neighbour who’s husband is in a care home. I go to visit Bridget 3/4 times a week and then come home to an empty house. This lady, before lockdown, didn’t just visit, she considered the care home somewhere where she’d stay all day with her husband ( breakfast, dinner and tea). So her empty house is just somewhere to rest her head. Her life is her husband no matter where he is. What she dealt with at home with him she continued and will continue with inside the care home.

You can see the logic. And does that reflect on me not wanting to do the same? Is there a selfishness in not wanting to spend all day in Bridget’s home? It would the ultimate act of love, to sacrifice my independence at home for being with Bridget all the time
( apart from bedtimes).
I mean, I’m always going on about how much I miss her, so logically wouldn’t that be the answer? Has anyone considered this as an option or not?
I wish my daughter had never told me!

peter

Old Flopsy has said it all, Peter, but I would just like to add that I do not think it would be all that wise to do this. I think it’s wiser to keep some independence at home because otherwise one day this might be very important, if you see what I mean. Goodness knows how I would have survived if I had spent all day every day with Keith and then there was nothing ,,,You are loyal and loving and you really are doing your best. Kindredx

 

[Dutchman]

Thank you again @Old Flopsy for your advice.

I listen to others and I sometimes consider I’m not doing enough. I suppose, if one did spend all day at the home then the question is …..how long would that last?

But instances like this always whisper guilt at me and I’m made to feel inadequate, or at least, could do more.
peter

 

[Dutchman]

Thanks @kindred . Bless you both

Peter❤️

 

[Andy54]

As much as I miss D and often feel guilt that she is in care and not at home with me I don't think spending long periods at the care home would be the solution. The way I look at it although I don't get to spend that much time with her at least a lot of that time is "quality time" not the many long hours I used to spend at home trying to meet her needs with her resisting and being uncooperative (and that's putting it mildly).

 

[Dutchman]

I was quite surprised when I was left alone with D during the visit as many others have mentioned being accompanied by a "minder" there seems to be a lot of confusion and inconsistency with visiting rules between different homes. I totally agree with the point of rejoining ordinary life again - how will we ever get to that point. It is one thing accepting our loved ones situation it is quite another thing "getting over it". Although my visit went a little way towards easing the sense of guilt that I had abandoned D in her hour of need it does of course do nothing to fill the huge void in my life. I constantly find myself thinking of all the things we will no longer do together and this is what saddens me the most, silly simple things like sharing a leisurely Sunday lunch with a bottle of wine, a hand in hand walk along a favourite beach. Will I ever be able to visit some of our favourite places ever again?
Andy

Hi @Andy54 . Just reread your posts and I got to this one where you mention visiting previous favourite places.
I’ve been avoiding this. It was fairly easy to do in lockdown but now things have eased I can drive most places but don’t want to.

Towards the end when Bridget was still with me we’d go to the same cafe/ seaside place all the time it was the least hassle. When times were normal we’d visit the same campsites, go to NT gardens ( ordinary stuff) but I couldn’t go on my own, what’s the point?

In many respects Covid has did me a favour by restricting my outings. Guilt again ( ggrrrr!) because she’s within the home and I’ve got the freedom of travel ( freedom I’d swap in a heartbeat ) which means very little.
Peter

 

[Dutchman]

I’m sitting here in the quiet of the front room trying to work out my feelings. I wish I didn’t analyse stuff so much!

I miss her so much and then I reread my journal and posts of a year and a half ago and realise how difficult it all was. I wouldn’t want to live in the upheaval of the dementia life we had but, after 20 odd years of a great marriage, being separated from the one you love and being reminded week after week of what I’ve lost, well I’m lonely as hell.

I’m told things do get better, that we need to work on our grief otherwise progress won’t be made. But in many respects I don’t want progress. I’ve been down this road before!

Feeling better would equal a betrayal of the awfulness of the situation. Why should I or deserve to feel better ( even begin to come to terms with it) when Bridget is suffering with dementia, is stuck in a care home with no freedom, doesn’t know the love of her love ones, is slowly dying of dementia and I have this supposed freedom that I don’t want to use. I still feel I have to pay the penalty of placing her in the home, that burden of guilt is still felt. So feeling bad and awfully unhappy is my lot for what she’s going through.

These are thoughts I’m try to work through in the safety of our Forum. Reply if you feel up to it.

Peterx

 

[Old Flopsy]

@Dutchman I can identify with your persistent thoughts because I too have similar guilty feelings that go round and round in my head.

I think about OH stuck in the care home- unable to walk outside. Does he know I still love him? Does he wish he was back in his own home snuggled up under his blanket on the settee? Can he understand why he isn't?

Should I discuss it with him next time I visit? But I would only want him to say he understands why it has to be this way- if he said he blames me (and not the dementia) then how would I handle the extra guilt. It really is a no win situation. I just hope he is not constantly concerned about why he is in 'that place'. But I have to tell myself that he will be enjoying the company of others like him, and the obvious love of the carers who help him with walking, toileting, eating, activities, etc.

I have my car on the driveway and the beauty of the Peak District on my doorstep- but I have no interest in going for a drive alone- I would be noticing all the other couples 'out enjoying themselves' in my mind.

So you are not alone Peter- many of us are enduring this daily torment.

Old Flopsy x

 

[Andy54]

I think perhaps we feel not only our own sadness but we also take on the feelings that we would expect our loved ones to have if they were fully aware of the situation, a sort of "sadness by proxy". D no longer really knows who I am or that we have been married for 43 years. She is not aware of her "lack of freedom" or the loss of what we once had together so maybe I subconsciously take that on as well as my own feelings.
We are sort of stuck in "no man's land" we could no longer cope with needs of our loved ones at home so we arranged for them to be safe and cared for elsewhere and now we find it difficult to accept that they are not still with us.
Not sure if any of this makes sense but still need to have these thoughts
Andy

 

[DianeW]

Ohhh Peter I feel that last post is so very apt and can see the progress you have made In your understanding of where you are.

I have thought for a while that you are consciously punishing yourself as a way to continue your own suffering, as you don’t feel deserving of moving on, and that in doing so.....in living a life again, you would be betraying Bridget!!!

I have no wise words for you that haven’t been said.........because it is only when you finally accept your situation...accept that you did your best for Bridget, accept that most people feel like they could have done more, accept that Bridget as sad as it is...is somewhat removed from you, and is content in her new world, totally unaware how you are struggling (which I see as a blessing she is not fretting for you).

Moving on with your life Peter doesn’t mean you are letting Bridget down or are betraying her or forgetting the life you had together........on the contrary I think it’s a reflection on the relationship you had and the love and life you shared together.....do you know many people never get even close to that special relationship you had!!!

The way you live your life going forward is up to you, nobody can tell you how to be, however well meaning their intention.......no it’s all on you how you move forward.

Have a nice day X

 

[Dutchman]

Yes, acceptance , that’s the key, to accept that where she is now is best and I did all I could without fault. I suppose we’d all like to be a peace with all of that and rest in the knowledge that we’re just humans trying to keep the lid on a situation that is forever boiling over.
Once again I’m humbled by the time and care you’ve all taken to come back to me and help me.
Thanks. Peter

 

[None the Wiser]

I think perhaps we feel not only our own sadness but we also take on the feelings that we would expect our loved ones to have if they were fully aware of the situation, a sort of "sadness by proxy". D no longer really knows who I am or that we have been married for 43 years. She is not aware of her "lack of freedom" or the loss of what we once had together so maybe I subconsciously take that on as well as my own feelings.
We are sort of stuck in "no man's land" we could no longer cope with needs of our loved ones at home so we arranged for them to be safe and cared for elsewhere and now we find it difficult to accept that they are not still with us.
Not sure if any of this makes sense but still need to have these thoughts
Andy

@Andy54, this is a really helpful and wise post. I feel that you‘re right in saying that we’re projecting thoughts and feelings onto our loved ones that they may well not be experiencing because of their illness.
I wouldn‘t have ‘put’ my husband into a home if I could have kept him safe at home. I reluctantly came to the conclusion that he needed a team of people to look after him. If he had had a different illness would I be feeling the same conflict? Or would I feel OK because he is being well cared for by experts?
I can’t help but wish that my husband was getting some fresh air. I used to make sure that we went out every day when he was at home.

 

[Dutchman]

Hi there @Andy54 @None the Wiser @DianeW
It’s true I believe that suppose our love ones had a different illness, equally awful and one that needed care from a team of people, then we may find it more acceptable. But dementia robs us the last chance of a relationship. There really is no other condition like it.

Oh the chance to talk to Bridget and reminisce, joke and tell stories. We could at least make plans for our end of days, cry together and give each other some companionship.