Q&A: Do we continue family vacations with Alzheimer’s?

I came across this question on a Danish caregiving forum (DemensNet.dk) through the Danish Alzheimer’s Association (Alzheimerforeningen), and thought it would be relevant to include here. The questions are not uncommon to family situations, and the answers are superb!

Danish summer houses

English translation: Question on holiday

We are siblings of 3, and have always had our vacation with our recently diagnosed mother (Alzheimer’s). She is on an Aricept treatment at 10 mg, but it has no significant effect despite the fact that she is only 64 years old.

We consist of three siblings, a son-in-law, and three grandchildren.

But, now it is that our mother can no longer/we can no longer have vacation together. It is simply too much for us all. But, we are unsure of how we tell her that we no longer want to hold our tradition of vacation together for next year.

How do we make it the most lenient / understood by all parties, since we are not all equally far in understanding the disease and its consequences?

Most of all – how do we tell our mother that we do not want her to be with us on vacation? Should we split up, should we ”lie” – which is certainly not going to be good, or how to tackle the situation that some of us would like to keep the vacations together – keep the tradition up to date.

On our last holiday we had together, our mother had to go home early because she had more daily angry outbursts against several of the family, so it is no longer a good vacation for some!

Many thanks in advance for answers.

Reply in English translation (from DemensNet):

Dear siblings and family

Your mother has a serious illness, which means that she cannot remember so well anymore. This must be the starting point for what I can do.

Firstly, you shouldn’t discuss next year’s vacation with your mother at this time, she will have a hard time to decide – and you do not know how things will look next year.

You must make a decision whether to continue the tradition of the vacations – without your mother. If she is asking questions about next year’s vacation, tell her that you will all find out in due time. Secondly, I do not expect that you can always say “the truth,” you will need reasonable explanations that your mother can accept – even if it’s not the whole truth.

Since your mother did not do so well with many people at once this year, it will probably be even more difficult next year. If your mother is asking questions about the vacation, try to talk “around” the idea. Do not promise more than you can keep, it will give you a bad conscience/guilt. It will always be a balance between talking around the truth and when it is necessary to deal with the truth – one does this only to spare the ill.

You can consider how you can give your mother some good days in a small group. It may, for example, be a weekend with one to two people, and where the rest of the family could then come by for a shift. Look into whether your city/municipality has special offers for vacations for people with dementia – or take your mother on one of the Alzheimer’s Associations vacation trips.

It will always be difficult for the family to have the same insight and understanding of your mother’s illness and we react differently as male and female / son and daughter, and it partly depends on the personal circumstances of the individual to your mother / mother in law. Search for information and education about the illness and the change in behavior that comes when the cognitive functions are impaired, then you are better equipped to help and support.

One thing to avoid is discussing various problems when your mother is nearby. In addition, try to gradually learn to find plausible/reasonable explanations when your mother asks questions you honestly can’t give a straight answer to. Avoid answers that would hurt her, and accept that in order not to make her sad, you may be forced to come up with rewrites of the truth.

I think you should stick to vacations together as a family – even without your mother, not only for the adults’ sake, but especially for the children’s sake. With the development of the disease, your mother’s strength will be less and less, so you should always be aware of whether she becomes overstimulated, and that she will not be under-stimulated, both can create unrest and sometimes aggression. It is a difficult balance to keep, which is why advice from professionals can be a help.

Sincerely,

Ingrid Lauridsen

Gerontopsychologist

In Danish: Spørgsmål om ferie

Vi er et søskendepar på 3, som altid har afholdt vores ferier med vores fornylig diagnosticerede mor (alzheimer). Hun er i Aricept-behandling 10 mg, men har ikke nogen nævneværdig effekt heraf på trods af, at hun kun er 64 år.

Vi består af 3 søskende, svigersøn og 3 børnebørn.

Men nu er det sådan, at vores mor ikke længere har godt af/vi har godt af at holde ferie sammen. Det er simpelthen for meget for os alle. Men vi er usikre på, hvordan vi får fortalt hende, at vi ikke længere ønsker at afholde vores tradition for fælles ferie til næste år.

Hvordan gør vi det mest lempeligt/forståeligt for alle parter, da vi ikke alle er lige langt i forståelsen af sygdommen og dens konsekvenser?

Mest af alt – hvordan får vi fortalt vores mor, at vi ikke ønsker hun skal med os på ferie? Skal vi splitte os op, skal vi “lyve” – hvilket bestemt ikke vil være godt eller hvordan takler vi situationen, da nogle af os gerne vil afholde ferien sammen – holde traditionen ved lige.

Vores sidste ferie vi havde sammen udviklede sig sådan at vores mor måtte hjem før tid, da hun havde flere daglige vredesudbrud mod flere i familien og så er det ikke længere en god ferie for nogle!

På forhånd mange tak for svar.

Reply in Danish (from DemensNet):

Kære søskende og familie

Jeres mor har en alvorlig sygdom, som medfører, at hun ikke kan huske så godt mere. Det må være udgangspunktet for, hvad I kan gøre.

For det første skal I ikke drøfte næste års ferie med jeres mor på nuværende tidspunkt, det vil hun have svært ved at tage stilling til – og man ved ikke, hvordan tingene ser ud næste år.

I skal tage en beslutning, om I vil fortsætte traditionen med at holde ferie sammen – uden jeres mor. Stiller hun spørgsmål om næste års ferie, må I svare, at det finder I ud af til den tid. For det andet  må I ikke forvente, at man kan sige sige “sandheden” altid, der bliver brug for rimelige forklaringer, som jeres mor kan acceptere her og mu – også selv om det ikke er hele sandheden.

Da jeres mor i år ikke klarede samværet med så mange personer på én gang, vil det formentlig være endnu vanskeligere næste år. Stiller jeres mor spørgsmål om ferien, må I forsøge at snakke “uden om”. Lov ikke mere end I kan holde, det giver dårlig samvittighed. Det vil altid blive en balance mellem at snakke uden om og det at blive nød til at omgås sandheden, det gør man jo kun for at skåne den syge.

I kan overveje, hvordan I kan give jeres mor nogle gode dage i en mindre gruppe. Det kan f.eks. være en weekend med en – to personer, og hvor den øvrige familie så kunne komme forbi på skift. Undersøg eventuel om kommunen har særlige tilbud om ferieophold for demensramte borgere – eller tag jeres mor med på en af Alzheimerforeningens ferieture.

Det vil altid være svært i familien at få den samme indsigt og forståelse for jeres mors sygdom, dels reagerer vi ofte forskelligt som mand og kvinde/søn og datter, dels vil det afhænge af det personlige forhold den enkelte har til jeres mor/svigermor. Søg oplysninger og undervisning om sygdommen og den ændrede adfærd den medfører, når de kognitive funktioner ødelægges, så er man bedre rustet til at hjælpe og støtte.

En ting man skal undgå er at diskutere diverse problemer, når jeres mor er i nærheden. Desuden må man forsøge gradvis at lære at finde plausible forklaringer, når jeres mor stiller spørgsmål I ikke sådan lige kan svare ærligt på. Undgå svar der ville såre hende og accepter, at man for ikke at gøre den syge ked af det, kan blive nød til at komme med omskrivninger af sandheden.

Jeg synes, I skal holde fast i at holde ferie sammen som familie – også uden jeres mor, ikke alene for de voksnes skyld, men især for børnenes skyld. I takt med sygdomsudviklingen vil I opleve, at jeres mor magter mindre og mindre, derfor skal man hele tiden være opmærksom på, om hun bliver overstimuleret, og samtidig at hun ikke bliver understimuleret, begge dele skaber uro og til tider aggression. Det er en svær balance at forholde sig til, hvorfor råd og vejledning fra fagpersoner kan være en hjælp.

Venlig hilsen

Ingrid Lauridsen
Gerontopsykolog

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