Just moaning...sorry!

[THEHELP]

I am just moaning/venting really, but it can make difference sometimes. Today we have had what I would now term as 'a good day'.
I've had time to think, I suppose.I'm not sure if I underestimate my husbands problems....then again at other times I think am I making a mountain out of a mole hill. I feel we are well supported..social worker, CPN, excellent GP, psychiatrist, care package, supportive daughters and friends. Yet, despite all this I sometimes feel that I am swimming against a very strong tide!
My husband will soon be 67 and he has Vascular Dementia. He also has bipolar, COPD, an underactive thyroid gland and has had a double bypass. With all his other health problems I felt there was always hope, but with the Vascular Dementia I see no hope at all.
I see today as a good day, yet my husband has said very little that makes sense, hasn't been sure what day it is or what time of day. He went into town briefly with his carer,other than that he has nodded off sitting up on the sofa, eaten (a huge positive at the moment). How can this be a good day?
Perhaps my positive mood is because we actually got a few hours sleep last night. Lots off upstairs and downstairs trips by my husband before midnight....even though he has sleeping tablets. Then, for the first time in weeks, he slept almost solidly for five hours...amazing!!!
The thing is that I think I become so used to the problems related to Vascular Dementia that I don't see thing changing until a crisis occurs. Quite often the crisis occurs at the same time that an infection rears its ugly head. By the way, can anybody explain to me why my husband gets so many infections when he didn't pre dementia? Each time he gets an infection his dementia becomes worse, so I dread them ...he always ends up in hospital.
If I get exhausted now, where will I find the energy when things become more difficult? I know from reading the posts that there people managing situations that are far more difficult.
Hope this makes sense...just writing down my thoughts really.
Hugs to everybody who needs them today.

 

[ASH74]

Hugs to you too....

For me dementia is a roller coaster (without the fun!) .....you really want to get off....you know when things are going slowly that they will suddenly change and go fast and out of your control again.

For me with my FIL it is the days when nothing goes wrong I feel it is a good day......

I hope you continue to have a good few days.


Sent from my iPad using Talking Point

 

[Sue J]

Hi The help

Yep, it may feel like you're swimming against a very strong tide (know how you feel as do most on TP) but you're still swimming and managing a 'good' day too

I get lots more infections which knock me for six since my symptoms started need lots of rest.

Hope tomorrow is another good day for you both

Best wishes
Sue

 

[Tin]

Makes perfect sense to me and so clear, shows you still have hidden strength and clarity. I just seem to wobble from one day to the next hoping tomorrow will be better, but truth is the best I can hope for is that my mum sleeps for more than 4 hours without waking and wandering through the night. To avoid some evening sundowning I had to give mum 1mg Lorazapam tonight, its been a long day.

 

[Jinx]

I do feel for you, you're husband has such a range of problems at what seems a relatively young age. Mine is 82 and has vascular dementia, COPD and osteoporosis that has caused a stress fracture in his spine so he is in a lot of pain most of the time. I don't know if dementia has any bearing on the number of infections but my husband seems to get a chest infection every 4/6 weeks and as you say it impacts on his mental state. He has just been in hospital through the last infection. The paramedic who came when he was very poorly said that often people with COPD can have antibiotics and short dose steroids available at home to use at the first sign of an infection but we have never been offered that by our GP. Big virtual hug on its way.


Sent from my iPad using Talking Point

 

[esmeralda]

Hello Help, don't feel you have to apologise, everyone feels overwhelmed at times and it's good for us all to know we're not alone in this.
I certainly don't have all the answers, in fact I feel I'm having a relatively easy time at the moment because although my husband is physically quite disabled and can't carry out even simple tasks he doesn't have 'difficult' behaviours. However none of us know what is ahead, and it may not be as bad as we fear. Hopefully if things get a lot worse for you you will be able to access more help.
Know what you mean about not being sure whether you are underestimationg or overestimating the problems you have to deal with. It's hard to be objective aboutthis and as you say, if you have a good nght's sleep you can deal with things better. Sometimes it feel it would be good for someone else to be able to observe just how things are but often the person with dementia presents differently when professionals/family/friends are present. Do you have access to a Carer's group? That may be helpful for you to talk to other people who do understand.
Gosh I'm rambling. I'm sure you will get lots of good advice from others who are more experienced than I am.
Hope you have a good night.
Es
x

 

[Scarlett123]

Never feel that you have to apologise and never confuse "having a moan" with "telling it how it is". I think (though it's only my opinion), that the resistance level of a lot of AD sufferers is low, the same way that yours is probably lower since you started caring.

Because things are so unpredictable, you never know what is going to happen on any given day. Some days you feel you can cope, others you feel like you're in a vat of treacle, and just can't get out.

Sharing experiences here on TP was always a great help to me. The support is priceless.

 

[THEHELP]

Never feel that you have to apologise and never confuse "having a moan" with "telling it how it is". I think (though it's only my opinion), that the resistance level of a lot of AD sufferers is low, the same way that yours is probably lower since you started caring.

Because things are so unpredictable, you never know what is going to happen on any given day. Some days you feel you can cope, others you feel like you're in a vat of treacle, and just can't get out.

Sharing experiences here on TP was always a great help to me. The support is priceless.

Thank you to all who have replied. Every body makes such good sense. I am so pleased that I discovered TP. It makes such a difference knowing that others know exactly what I mean. You are right this disease is SO unpredictable that it really is like a roller coaster ride...I hadn't thought of it that way before, but it sums the experience up so well.
Hugs and hopefully a restful night to all.

 

[THEHELP]

Hi The help

Yep, it may feel like you're swimming against a very strong tide (know how you feel as do most on TP) but you're still swimming and managing a 'good' day too

I get lots more infections which knock me for six since my symptoms started need lots of rest.

Hope tomorrow is another good day for you both

Best wishes
Sue

Thank you for being so thoughtful Sue. I hope tomorrow is a good day for you too.

 

[chick1962]

I do feel for you, you're husband has such a range of problems at what seems a relatively young age. Mine is 82 and has vascular dementia, COPD and osteoporosis that has caused a stress fracture in his spine so he is in a lot of pain most of the time. I don't know if dementia has any bearing on the number of infections but my husband seems to get a chest infection every 4/6 weeks and as you say it impacts on his mental state. He has just been in hospital through the last infection. The paramedic who came when he was very poorly said that often people with COPD can have antibiotics and short dose steroids available at home to use at the first sign of an infection but we have never been offered that by our GP. Big virtual hug on its way.


Sent from my iPad using Talking Point

Hello jinx , it's true what the paramedic said, my husband has also COPD and our GP gives us a prescription for ABs and also prednisolone which are steroids for a week just incase and we get it from the pharmacist if and when we need it. He has also a steroid inhaler. Might be good to ask your GP. X


Sent from my iPhone using Talking Point

 

[LYN T]

No you aren't moaning-just telling it as it is.

I agree with Scarlett-Dementia sufferers do seem to get more infections. My OH also had COPD and Bipolar, but he had Alzheimers. It's a good idea to have a prescription at the ready for chest infections-and the correct inhalers. If your OH has a problem using an inhaler correctly get a prescription for a spacer.(you can also buy them online).

I think most carers feel physical and emotional tiredness-lack of sleep, worry, it does grind you down.Is it possible that you can have some respite for your Husband?

Keep coming back-you will always be supported here,

Take care

Lyn T X

 

[Jinx]

Hello jinx , it's true what the paramedic said, my husband has also COPD and our GP gives us a prescription for ABs and also prednisolone which are steroids for a week just incase and we get it from the pharmacist if and when we need it. He has also a steroid inhaler. Might be good to ask your GP. X


Sent from my iPhone using Talking Point

Thanks Chick. OH has a steroid inhaler as well as Ventolin but I will ask GP about having standby script for ABs and steroids.


Sent from my iPad using Talking Point

 

[chick1962]

Thanks Chick. OH has a steroid inhaler as well as Ventolin but I will ask GP about having standby script for ABs and steroids.


Sent from my iPad using Talking Point

John has Ventolin too and Spiriva which is a preventive capsule inhaler. I am sure GP will issue stand by meds x


Sent from my iPhone using Talking Point

 

[WIFE]

Sorry to read of your husband's health problems and your obvious feelings of sadness and frustration. My husband rarely had a day's illness in all the 43 years we were married but once the dementia took hold he was rarely without either chest or urinary tract infection - the latter being stated on his death certificate as a primary cause. I agree with Scarlett and LynT that dementia obviously affects the immune system and the poor dears become more prone. Pleased to hear you have a good team and G.P. Have you talked in depth with your G.P. about the problem of recurrent infection? Wishing you strength and love.

 

[truth24]

Can't add anything to that already written. Just sending a big hug.

Sent from my GT-N5110

 

[canary]

Mum gets a lot of infections too and I have been told that its because she is forgetting how to fight them.

Every time she gets another infection her dementia progresses that much more.

 

[THEHELP]

Each time my husband has had an infection he has become more confused and is sometimes worried/frightened by some of his thoughts. When this happens we tell him that he needn't worry it is just dementia gremlins......seems to help...at least in the short term. Darn these infections.