How did you let her get so bad?

[DaveM]

We had an "invisible" distant Cousin from the other side of the family show up uninvited a few days back. After coming in and talking to my Mother (While the nurse and carer were both trying to work with her already) for a few minutes, she pulled me aside and hissed, "How did you let her get so bad?" I was a bit stunned by the question.

My Mother was well fed, clean, freshly showered, well hydrated, free from bumps and bruises, decently dressed, sitting in a clean, safe room and sitting on a fresh, dry chair pad. She has no skin breakdown, her blood pressure is under control and all of her medications are properly administered. I said, she's doing quite well and the nurse agreed with me, telling me to keep doing what I was doing, and she would see about slight medication adjustment. The cousin replied, "She doesn't even recognize me, and she can't string three words together! How can you say she is doing okay?"

I explained the type of dementia she is suffering from (Vascular) and how er chemo from the cancer created some confusion and added to the circulation problems. I told her about having to watch her 24/7, lift her on and off the toilet a dozen or more times a day, cooking three meals from scratch to maintain sodium and cholesterol levels, coordinating all of her medical care with four specialists, arranging Physical, occupational and cognitive therapies, doing her exercises with her on the days she didn't have therapy, taking her out to social engagements. trying to keep her entertained and involved at home dealing with the extreme insomnia at night and all of the other things it took to keep her healthy. Unimpressed, she replied, "Well, I never would have let her get that bad!"

What I said was something to the effect of, "I'm sorry you are upset by her mental state, but we have done all we can to slow her decline as much as possible and keep her as safe and comfortable through this whole mess."

What I really wanted to say was, "Okay superwoman, don't let the door hit you in the butt on you way out!" The Hospice Nurse thought she was lucky not to have a size 14 footprint on the back of her dress.

How many of you have felt, at one time or another, you, as a caretaker, were being held responsible for your loved ones disease? This dimbulb was pretty extreme, but I have felt the same disappointment from others lately. Most of them start out with something like, "If you had given her this miracle herbal treatment that my Chiropractor's wife sells out of her house, she would be doing better now." It seems to be people who are very disconnected from the daily routine of our lives. Most of the people who are even remotely involved with us are grateful to see that she is still in good spirits and fairly pain free.

As I said in an earlier thread, sometimes I would appreciate it if the "Invisibles" were just a little bit more so!

 

[Cat27]

I hope the silly moo doesn't show her face again!
You're doing an amazing job with your mum.

 

[Chemmy]

Oops, duplicate post.

 

[Chemmy]

My dad's younger brother never made the trip from Scotland to England in the forty-odd years we lived down south, although we often visited them.

When Dad died, uncle J wanted to come to the funeral but I told him - politely - not to bother as I knew how furious my dad would have been.

I suppose what I'm saying is that some relatives aren't worth your time and energy, and your cousin deserves to join the ranks of the 'long-lost' after crass remarks like that. The hospice nurse was right

 

[BR_ANA]

The Hospice Nurse thought she was lucky not to have a size 14 footprint on the back of her dress.

She really deserved. She was offensive to your mother in front of her.

Most of them start out with something like, "If you had given her this miracle herbal treatment that my Chiropractor's wife sells out of her house, she would be doing better now."

There is a long list of miracles we could have done. I usually said on a polite way that it was done and didn't worked. ( tea, drugs, fruits, gym, puzzles...). And then I was used to said that on same way you don't expect someone with a broken femur run, you shouldn't expect someone with a terminal brain disease speak or recognise someone insignificant as her.

You are a superhero. You are right keeping your mum comfortable and pain free.

 

[Canadian Joanne]

I never cease to be amazed at how arrogant and thick people can be. This cousin obviously doesn't understand disease process. Ask him/ her how they would prevent cold symptoms once a person has a cold. There is disease progression which we can't do anything about.

 

[marionq]

Dave I am inclined to think that people who are that obtuse and insensitive have a mental health issue themselves. When you see how carers struggle, criticism is so out of place.

Most people who hear that my husband has Alzheimer's immediately say "How hard for you". This is because almost everyone nowadays has some experience of friends or family caring for relative with this damned illness.

We know you're doing sterling work for your mother.

 

[sleepless]

My husband was diagnosed in 2003 and I have worked very hard to maintain his naturally cheerful and pleasant outlook on life, always emphasising the good and downplaying the not so good.

Sometimes just one remark from someone devastates me as it seems to undo so much that we have achieved. Recently a visitor sitting close to my husband turned to me and said "You know he's not going to get better don't you?"

Leaving aside the obvious insult to my intelligence and experience hard won over the past thirteen years, the effect on my husband was like a knife in my heart. He had his eyes closed but his face changed. I redirected the conversation, and when the visitor had gone I told my husband a 'love lie' several times over, saying that X was talking a lot about someone else, who is very old and poorly in hospital. I was trying to erase the negative feelings the visitor left him with. I think it worked, aided by his memory issues of course, but when things can come and go in his memory as they do, I hate it when negative incidents occur like the one above.

I sometimes think I should have cards printed saying 'H has Alzheimers'. His hearing is not impaired. Please NEVER assume that he cannot understand what you are saying.'

There is so much to contend with when caring for someone with dementia, and it's awful when what should be a good thing, ie a visit, becomes another problem.
You have my utmost sympathy.

 

[Kjn]

Dave you did extremely well to not strangle her like I might've

Keep going, you're doing brilliantly xx

 

[malomm]

A lot of our invisibles just simply don't or won't understand what dementia/AZ actually involves, or how it affects the PWD. My reaction to a couple of similar relatives is eff off and stay away. I don't do polite.
keep smiling,
malomm

 

[LadyA]

It's like the very occasional visitors who used to come to visit my husband and would say to me "Are you sure he's that bad? He seems fine to me!" when they had spent a maximum of ten minutes with us. And after they had left, my husband would breathe a sigh of relief, and say "I thought they'd never go! Who are they, and what did they want?" - and these would have been people he had known for years! But my husband always presented very well, would direct the conversation himself (in the early days) and as long as he could do that, so he could talk about things he knew - unless you spent a long time with him and he let his guard down, you'd never see the cracks.

 

[canary]

Ive been getting very cross recently with a "use it or lose it" brigade. There is the very strong implication that the reason that skills are being lost is because they havent been using them. And the reason that they havent been using them is because they havent been stimulated properly

Im afraid my response was a curt, "when you are talking about dementia you are going to lose it anyway - whether you use it or not!!"

 

[nae sporran]

With OH daughter never listening, but always happy to lecture on whatever she heard on telly, and my mum telling me I'm part of the family without ever bothering to ask how OH is doing I sympathise completely with the size 14 on the derriere approach.
Keep up the god work Dave, and don't listen to numpties.

 

[irismary]

Dave you are clearly doing a superb job and I don't think i would have behaved as well as you did with your cousin. I think I would have blown a fuse. I get the "oh I understand I've been on a course", well no they ****** do not understand. I am so low on the family pecking order I have given up on them but keep quiet so I can keep the little bit of help I do get when I ask - its NEVER just offered. And its minimal. Hey ho.

 

[totallyconfused]

Ive been getting very cross recently with a "use it or lose it" brigade. There is the very strong implication that the reason that skills are being lost is because they havent been using them. And the reason that they havent been using them is because they havent been stimulated properly

Im afraid my response was a curt, "when you are talking about dementia you are going to lose it anyway - whether you use it or not!!"

Monty Pythons Terry Jones has dementia and he couldn't give a speech recently because he has lost the abilty to speak.

Heres a man with such a talent for language and comedy and life in general and he has dementia. Some of the best brains in the world have it. So this use it or lose it **** is not going to help anyone.All is does is blame the person who has it or the carers/family and that isn't fair.

 

[MollyD]

Dave you did extremely well to not strangle her like I might've

Keep going, you're doing brilliantly xx

I second this. You're marvelous.

 

[jugglingmum]

Ive been getting very cross recently with a "use it or lose it" brigade. There is the very strong implication that the reason that skills are being lost is because they havent been using them. And the reason that they havent been using them is because they havent been stimulated properly

Im afraid my response was a curt, "when you are talking about dementia you are going to lose it anyway - whether you use it or not!!"

Sadly this seems to be propagated by some that should know better, alot of effort seems to focus on very early stages, when I realised my mum had dementia(hostess mode and my ignorance), she had lost so many abilities I assumed she must be mid stages, boy was I shocked to realise she was (and still is) early stages, as she was way past the use it or lose it stage.

Dave, I would have spoken my mind and told them that they didn't know what they were talking about, and told them that the statements they were making were extremely insulting to both of you. At least you had supportive people present.

She would have had what for from me for daring to interrupt, and the disrespect she showed for the nurse and carer's work as well.

A big pat on the back for being so restrained.

 

[SisterAct]

Oh The Invisibles!!
Such an apt name for them as that's what we should do, just forget they are there as in 'Dementia World' we have enough to cope with.
When I told all the family how bad our Dad was, one of my cousins said, "would it help if I visited him?" She has never visited him or our Mum even when they were in good health.
My polite answer
"NO"

Dave you are doing an amazingly and you will find out now who your REAL friends are. I know we did.
Take care
Luv
Pol x

 

[Kjn]

I had some relatives of OHs here today , know my dad, came to be nosy asking re dad...
One comment of "oh hows dad" followed by " oh it's difficult isn't it"

My extremely curt reply of "you have absolutely no idea how difficult any of it is , no idea how it feels , no idea at all unless you live it" seemed to get through backed by my OH.
They wernt here long.
Due to see them next week, bet they keep schtummm next time

 

[lemonjuice]

People who have no experience of dementia have such a narrow understanding. It is a disease of the brain causing brain failure and there's nothing one can do once it has set in. In my opinion by the time it's obvious. the damage is probably already done- it just gets progressively worse.

My own mother who has watched several relatives with it did everything to prevent it. She is bilingual - supposedly prevents against it.

She was always incredibly fit, doing Keep Fit, walking, taking up green bowling etc- also supposedly preventative.

She kept her mind active, doing word puzzles, maths puzzles, playing card games . . . . also supposedly helps.

Yet she still developed it. Possibly later than she might otherwise have done? But I believe, looking back, that te first symptoms, odd behaviour and 'take on reality' go back 20 years. hence by the time it was diagnosed any treatment was ineffective. She did try Aricept but it had no positive effect and did have some negative side-effects.