another downturn ?

[petromany]

I am feeling so depressed, feel my hubby is going downhill rapidly, this last week he seems to have lost all his strength, got stuck in the bath, and it took all of my efforts to get him out; I usually hand his clothes to him and he is able,just about, to put them on, however , this week he has just stood there. He can no longer shave, and I am really making a bad job of it which makes him angry He is now relying on me to walk him from room to room not knowing which is which, again getting agitated by the second. He is dreadfully slow walking, and his eating habits are getting worse.

The mh team have applied for "continuing health care, " and I have been looking at NH
however none have been able to help me due to his behaviour problems. The concensus is that he needs one to one and 24 hr care. Who will give him this !!! It has been suggested that I look out of the area, which I don't mind as long as it is within reasonable distance. I have come to the conclusion that because he is mobile we have a problem. Someone even suggested that he went on a drug plan ? to make him easier to handle. He is not violent to people, but just wants to be out all the time, and tries to leave the home, when he is in respite,

I am feeling very sorry for myself, and cant get my head around things. Feel as though from morning to night there is nothing in my life other than this, and I too am getting forgetful. On good days (very rare) I want him to stay home and dread the thought of him going , it seems so final. On the other hand I should be thinking of what is right for him. If we cannot find a nh to take him, I shall have to continue as best I can.

. I am so very stressed out and have a mouthful of ulcers, which the gp says is caused by stress, and nothing seems to help.
Sorry about this, had to let off some steam as I am sitting here alone as usual ,hubby was in bed at 7 p.m.

Should go to bed myself now I suppose. He will no doubt be up in the night and come 5 a.m. he is ready for breakfast etc.,

Oh dear, I promised myself I wouldn't do this, we all have our own troubles don't we, sorry,,,,,,,,,,,,,,,,,,,,,,

 

[Jan0702]

Don't know what to say, but just to let you know my thoughts are with you

 

[Grannie G]

It`s a terrible time, the time when caring 24/7 becomes more of a nightmare than ever because of challenging behaviours and lost skills.

I really sympathise with you petromany. It does look as if it`s nearing the time for painful decisions. I don`t know how you`ll get through this, your health seems to be suffering now, but somehow we do.

Take all the help, support and advice you can get. It`s all you can do.

 

[simpknt]

Hello Petromany,

I could have written your post! I'm going through exactly the same with my partner. Especially the bit about finding the way to rooms. I have only four rooms in my flat, but she does not know where the bathroom is. Janet cannot dress herself - everything is put on inside-out and back-to-front. Only Janet could put on a pair of trousers or bra back-to-front and insist I am the one who is wrong! Messy eating is a big problem. I have a waterproof cover under the sofa throw and a washable mat in front of the sofa. I have to set up the shower for her as she cannot remember how to turn it on (it's just press the button!). Her walking is getting very bad, very slow and hesitant. She's convinced she'll trip, especially on floors with any kind of pattern. She sees the pattern changes as steps.

Janet hates being indoors. She is constantly agitating to go out, but has no idea where she wants to go. She just gets lost when she's out alone which the carer and I rarely allow anyway. She has a worrying habit of going up to strangers and babbling nonsense at them. I usually inetervene when she does it when with me and explain Janet has dementia. The attitude of most strangers changes immediately from puzzlement to sympathetic understanding. There are an awful lot of nice people around.

Like you, I cannot bear the thought of putting Janet in a home. It would be saying 'goodbye' and I cannot bear the thought of that. I would rather have Janet with dementia in my life than no Janet at all. I rather think you have the same thought.

We have the Mental Health Team's GP coming to visit next week and there is talk of prescribing medication to relieve her anxiety (I think I need them as well!). A friend says they are to do with helping neurone activity and not tranquilizers. She says it is not uncommon to prescribe these drugs for dementia.

Sorry I have no words of help, but just wanted you to know that you are not alone with these problems.

David

 

[Izzy]

I'm so sorry to hear about the downturns for both of you. A number of people on the forum seem to be going through similar experiences just now. It's so sad. Just wanted to say I sympathise/empathise with you both. x

 

[Margaret938]

Hello Petromany
Lust like Simpknt this could be me writing all of these problems. However, the difference is my darling husband was admitted to a CH in April. I would have had him at home still, if it had not been for his anger and the fact that he was wandering away, he always made for the home he stayed with when he was growing up, back to his Mum and Dad. It was alright until his mobility became poor, and I was frightened he would fall or walk in front of a care, he had lost his road safety sense. All of this happened when he was put on a drug called Clopixol ( anti psychotic) for his anger problems. He was the kindest , caring and most loving husband and Dad before the illness started dictating to him. Slowly but surely all the things we loved were taken from us and he became less and less able to do things for himself. Our two sons and the powers that be really talked me into agreeing to have him admitted to the CH. first of all on crisis respite, but now he is in Permanently. My heart is broken, I miss him every second of every day, and the life I had is gone. George is happy and settled in his own world and I visit him everyday. In fact my visits are the only thing I look forward to.
I am sorry I don't have any real advice to give you, you, like all of us, are going through hell upon earth and there is no real answer. I would love to have George home with me, but the truth is I am not able to care for him 24/7. I do, however, enjoy quality time with him and I cherish that.
Take care,
Love Margaret x

 

[FifiMo]

Petromany,

Do you have this booklet? http://www2.westsussex.gov.uk/socialcareandhealth/adults/careguide2013/files/mobile/index.html#79

If so, then sorry. I thought it may perhaps offer you alternatives if nothing else.

Fiona

 

[simpknt]

Hello Margaret,

To be honest, your posting frightened me because I see things going the same way with us. I had 5 days of respite last month, but I was able to get 24-hour care at home for Janet. The carers have said they will not provide this service again because Janet is too difficult. Oddly, they said they could cope with her indoors, but she has a habit of dashing into the roads to catch buses and they considered that to be the major problem. I'm hoping to get increased care hours and that will be a big help. I'm very unwilling to put her into a CH for respite; it would be too traumatic for both of us.

I was very puzzled about your husband being prescribed Clopixol. I Googled it: 'Clopixol is not licensed for the treatment of dementia-related behavioural disturbances'. Thanks for making me aware of this drug. Forewarned is forearmed.

David

 

[LYN T]

Hi Petromany

If you have read Margaret938 post then that is my and my husband's life so I wont repeat my story. Margaret and I often say that we walk the same journey with our Husband's. The sad fact is that there are many carers on this forum who have to make heartbreaking decisions.My Husband is 66 and I was told that he needed 24 hour care after his last sectioning.Daycare had been withdrawn as he trid to attack the head carer. Looking back I know that I wouldn't have been able to care for him however much help I had. The violence and lack of sleep was terrible.

I don't know if this will help but in a strange way I am building a different relationship with Pete. He doesn't know me as his wife, but at times he's so pleased to see me. I visit everyday and take him lots of treats, and we listen to music and I read poetry to him. So you see that Pete is still very much in my life. Of course I miss him, but it's the pre-dementia Pete that I really miss.

Take care

Lyn T

 

[Noorza]

I think that was beautifully explained Lyn.

 

[Love&Light]

I am feeling so depressed, feel my hubby is going downhill rapidly, this last week he seems to have lost all his strength, got stuck in the bath, and it took all of my efforts to get him out; I usually hand his clothes to him and he is able,just about, to put them on, however , this week he has just stood there. He can no longer shave, and I am really making a bad job of it which makes him angry He is now relying on me to walk him from room to room not knowing which is which, again getting agitated by the second. He is dreadfully slow walking, and his eating habits are getting worse.

The mh team have applied for "continuing health care, " and I have been looking at NH
however none have been able to help me due to his behaviour problems. The concensus is that he needs one to one and 24 hr care. Who will give him this !!! It has been suggested that I look out of the area, which I don't mind as long as it is within reasonable distance. I have come to the conclusion that because he is mobile we have a problem. Someone even suggested that he went on a drug plan ? to make him easier to handle. He is not violent to people, but just wants to be out all the time, and tries to leave the home, when he is in respite,

I am feeling very sorry for myself, and cant get my head around things. Feel as though from morning to night there is nothing in my life other than this, and I too am getting forgetful. On good days (very rare) I want him to stay home and dread the thought of him going , it seems so final. On the other hand I should be thinking of what is right for him. If we cannot find a nh to take him, I shall have to continue as best I can.

. I am so very stressed out and have a mouthful of ulcers, which the gp says is caused by stress, and nothing seems to help.
Sorry about this, had to let off some steam as I am sitting here alone as usual ,hubby was in bed at 7 p.m.

Should go to bed myself now I suppose. He will no doubt be up in the night and come 5 a.m. he is ready for breakfast etc.,

Oh dear, I promised myself I wouldn't do this, we all have our own troubles don't we, sorry,,,,,,,,,,,,,,,,,,,,,,

You have NOTHING, NOTHING to be sorry about, you need to be able to off load these feelings, and who better to than people who understand where you are at.

There are no words that I can think of to make any of this better or easier or more tolerable for you.

If all the tears that have been cried by carers could wash away the pain then the world would be a pain free place. Pain is what we feel when we love,and the love expressed on TP by all who contribute, shows that when we hurt and feel all the associated emotions of complex relationships, we are functioning as caring and humane people.

I send you love and light and know that you will find your way through this journey and make the right decisions for you both, this is perhaps one of the hardest parts having to make decisions on your own particularly when you are feeling so low and then having to wait for action from support agencies.

You are a very strong person just worn out at the present time

xxxxxxxxxx

 

[Margaret938]

Hello Margaret,

To be honest, your posting frightened me because I see things going the same way with us. I had 5 days of respite last month, but I was able to get 24-hour care at home for Janet. The carers have said they will not provide this service again because Janet is too difficult. Oddly, they said they could cope with her indoors, but she has a habit of dashing into the roads to catch buses and they considered that to be the major problem. I'm hoping to get increased care hours and that will be a big help. I'm very unwilling to put her into a CH for respite; it would be too traumatic for both of us.

I was very puzzled about your husband being prescribed Clopixol. I Googled it: 'Clopixol is not licensed for the treatment of dementia-related behavioural disturbances'. Thanks for making me aware of this drug. Forewarned is forearmed.

David

Hello Dave,
I didn't mean to frighten you, I am sorry.
I fought long and hard to get George off Clopixol (I had read a lot about it) I finally badgered the consultant into weaning him off them. Then when he went into the CH they asked if I would allow them to put him on another AP called Risperidone a small dose, 500mcg because the staff were having problems with his behaviour (grabbing them and pushing them away) when they were administering Personal Care. I agreed and he tolerated the small dose very well, however they in their infinite wisdom have increased the dose to 1 x 500mcg morning and tea time. I have been in long email discussions with the consultant, and he knows that I am not a great believer in AP drugs, but he went to see George and although he agreed with me that some of the side effects were rearing their ugly head, like stooped and shuffling gait and slow movement, he was not showing signs of Parkinsonism. He is very much calmer now. So we are in the middle of a rock and a hard place. Of course I would like him off them completely, but the consultant has said that it will be monitored and they will keep him on this dose with caution. Of course, I never let go and any little thing that bothers me I email the consultant. My son is amazed that he replies to me almost immediately to every little query I have.
I wish you well in arranging increased care hours. And I agree CH Respite or Permanent is a very traumatic time. I find that I am the loser in it though, since George has settled in very well and is very happy with the staff always has a smile and a wink for the girls, he has company all the time, it is me who is alone in the home that was our little nest and it is sometimes more than I can bear.
Take Care,
Much Love
Margaret xx

 

[Margaret938]

Hello Petromany,
I have just been reading Lyn's post, she and I walk the journey. She is so right the visits we both have with our darling Husbands are what we make them, and I know that she makes the most of her quality visits just as I do, we do the same things. We plan nice treats to take in, read poetry and enjoy what we can glean from our visits, we have our 'down' visits but there is always someone on TP willing to pick us up., I am fortunate at the moment that George still knows who I am, unlike Lyn's Pete but we both know that a smile from them is all we need to brighten our day. Just as Lyn says it is the pre dementia husbands we miss, our tears a for the past and the present are only a heartbeat away.
I can say with all honesty though, that the open arms that have welcomed me on TP have seen me through many dark days and nights.
Take care,
Love Margaret xx

 

[petromany]

Thank you all who responded to my posting, we all seem to be at the same stage. My hubby has also been put on Resperidon, perhaps this is the reason for the deterioration, as he takes 1 tab morning and again at night. I am clutching at straws I suppose, but it was interesting to hear from you Margaret . Will keep on posting and let you know the outcome, still undecided. Take care everyone.

 

[Margaret938]

Hello Petromany,
Very interesting that your husband is also on Risperidone, how long has he been on it and what dosage is he on. Was he prescribed it for behavioural problems?
I have written to the consultant this morning to ask for George to be put on a lower dose, I have had no reply yet, I bet he is away on a holiday again !!! I will let you know how I get on.
Love Margaret x

 

[simpknt]

Hello Margaret,

You have no need to apologise. It's this awful, relentlessly destructive disease that scares me. Oddly enough, Janet already has all the symptoms you describe without the drugs! Goodness knows what will happen if she starts taking them.

We seem to be treading exactly the same path you have already trodden. Your final paragraph mirrored my fears exactly: an empty home (2 homes in our case) with no Janet. Like you, I am going to find it so incredibly painful. I keep asking myself how am I going to cope without her? I will never find another Janet, that's for sure. I think I used up all my good fortune when she came into my life, 20 years ago.

David

 

[Margaret938]

Hello Petromany
I brought George home this afternoon, it was in a way very sad to see him wander around from room to room picking things up, and to see him walking or rather shuffling
around the garden, I kept picturing the healthy and fit George and how he used to be so fleet of foot doing jobs around the garden and in the garage, he was always busy. I am not sure if I did the right thing bringing him home, he did not really recognise it as his own home (I don't think he did anyway) and it made me feel so sad and close to tears. However, I did it and he went back and settled in very well to his tea and having a nice relaxing seat in the quiet lounge (I was told this when I phoned later)
This life is hell upon earth for us, luckily our loved ones can't see what we see.
George's consultant replied this afternoon and is decreasing the Risperidone, so fingers crossed. I am not looking for a miracle, fortunately I don't believe in miracles but if it helps his mobility then I will be well pleased.
Take care,
Love Margaret x

 

[Margaret938]

Hello Dave,
You and Petromany do seem to be treading the path that both myself and Lyn have I have trodden. But do not despair, there are some good days and these are the days which keep us going.
I am the wrong person to tell you how you are going to cope without Janet, I have already told you how I feel in this empty house.
I am very touched by the last line of your post, what beautiful words you have written about the endless love you have for your wife.
Take care,
Love Margaret xx

 

[petromany]

HELLO mARGARET, Ken has been on resperidone since he was prescribed it whilst in respite at the middle of July Will keep a look out for your posting after seeing the Consultant. Take care.

 

[faithy]

So different -yet so alike

I am reading the post and as the others I can relate. My husband went in a NH at 58. I feel like all of you, it is heartbreaking, my life is incomplete, and we still worry even when our love ones are in a NH. I just got off of the phone for the third time with Tom telling him it is night not morning and his aide will be there at 730 morning - I said get to sleep, stop waking your roommates and I will be there in the morning. He says, ok goodnight. I hung up the phone and just cried and came on here to a safe place to share, when all seems hopeless, we have each other.

Peace,
Faith